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Yes, I have been to more medical appointments and have more on the horizon.
Last week I saw my new GP for the second time and am pleased to report that she is still as good the second time around and I will be sticking with her. She was running very late though and we were there two hours in total so it was quite a struggle. I get the impression she always runs late as is the type of doctor who is more concerned with doing a good job than sticking rigidly to the time constraints imposed upon her. I don’t mind waiting really if I will get a good appointment where I will be listened to and taken seriously, though it is not great when you are unwell and it took some getting over. She did look quite frazzled though and my partner did comment that if she carries on doing such a good job she may get burn-out! I really hope not. Outcome of the appointment is that I am on a higher dose of Gabapentin for my nerve pain and have started Mebeverine for my IBS.
I have not taken any drugs for my IBS for many years (just relying on dietary changes, as well as having tried lots of probiotics but with no real change) but after more than two years of a restricted diet it is still flaring up and painful there is no more I can do on that front, so thought I would try again with the drugs. About ten years ago I tried them all and had no improvement, but I think there is a slight improvement already after just three days this time! I need longer to really know but I think there is less pain at night-time and perhaps things are a bit calmer as I have not been playing it especially safe food-wise. The GP did suggest that I could try Amitryptaline at a low dose to help with IBS but to ask the POTS specialist if it’s ok.
So this week I have been to see the POTS specialist. She says Amitryptaline not a great idea unless absolutely desperate as it can lower blood pressure and increase heart rate – two things I do not need.
We also discussed the drug (Dilzem) that she started me on last visit. I think it has helped my stamina and also my recovery time after doing things, enough to be a trend but not in a really dramatic way. It is better than nothing. She did not change my medications this time, only the timing of one tablet and I will be wearing a blood pressure monitor for 24 hours soon to check how I am doing. Based on the results of that she will know if I can tolerate higher doses of drugs or not and adjust as required. I hope I will get to try higher doses as I know POTS symptoms are still affecting me daily and where would we go from here if not? I am not sure!
So that is it, two pleasant appointments which makes a nice change.
On a vaguely related note, my trigeminal neuralgia has been bad the last few days. Gabapentin is a listed treatment for this condition, though not the main reason I am taking it, but still it keeps flaring up. I am concerned, as reading about it, it seems that it is something that gets worse and worse over time and can become very bad. I wonder how bad it would be now if I was not taking Gabapentin? I am seeing the ME/CFS specialist in a few weeks and want to talk to him about my neuropathic pain in general and also the trigeminal neuralgia. I would like to understand how these conditions fit into my ME/CFS (if they do) and what I can expect long-term with them. They are quite concerning and debilitating on top of everything else. I also want to ask him about Low Dose Naltrexone (LDN). This is taken by some people with similar itch/nerve pains as me as well as people with ME/CFS so I think it might be worth trying. I hope he will be open to letting me try it without having to fight for it.
I have just received an appointment for the Pain Clinic at my new GP surgery. It is for next week. I have already had an initial telephone call and also filled in an assessment form for them. The doctor I will be seeing seems very intelligent and not patronising and keen to help me understand my pain issues. He did talk a lot during our phone call about Fibromyalgia and pain sensitization (or something similar to that) which is good but I don’t think the whole picture. I do not have a Fibromyalgia diagnosis and may have to take some info with me about pain mechanisms and ME/CFS as they do seem to be distinct entities and there is often much pain in ME/CFS in it’s own right… At least he is willing to talk about biological processes though, and did not sound too much like he was just going to teach me breathing exercises. I doubt he will have much to say to help me understand the nerve pains though. It will be interesting. The appointment will be an hour long, which will be a challenge in itself.
It would be nice not to have all these medical appointments. I know various people with ME/CFS who rarely bother to go (or know there is no point with their existing doctor) but I seem to have various issues that I really cannot ignore and that for which there does seem some hope of management/improvement with medical treatment. It would be so freeing to not use all my energy up in this way and just to be able to focus on going out to do things that are pleasurable or useful but it seems it is not to be. There are things I have never even brought up with a doctor for many years, or not at all, and I feel with this new GP that it might just be worth it to discuss all these minor loose ends sometime. How nice to feel that I can, even if there is nothing to be done. I am so glad I left that last GP surgery – all I ever got was a lecture and the impression that I was wasting their time or I got the distinct impression that they did not know enough to make it worth bringing anything up in the first place! Oh for the day when ME is universally understood and treated seriously… and treated effectively! It should not be a lottery just to get a GP who listens and has a “let’s try” and a “can do” attitude regardless of any actual effective treatments…
In the last few weeks I have noticed a gradual improvement in my stamina. I think there are a number of things that are potentially contributing to this improvement, which is great whatever the reason, though I would like to know what exactly is helping so that I can continue with it!
About six weeks ago I went to see the POTS specialist and had a list as long as my arm of current and pressing issues – she (rightly) could not deal with them all and it was not a successful appointment (for that and other reasons) and it upset me, but I could not pick and choose between all these issues as I was just overwhelmed by various issues which were all severe. These included: Sleep, Neuropathy and Trigeminal Neuralgia, Muscular Pain and Tension as well as other pain issues, POTS (this was low down the list so you can see how bad the other stuff was!), as well as medication issues.
She gave me a new medication to try for POTS (Diltiazem). I did not start it for the first few days as other outcomes from the appointment were that I should stop taking my sleeping tablet (eszopiclone) to see how I am without it, and also I had only just increased my dosage of Gabapentin (for Neuropathy) over the previous few days, so I did not want to confuse things by doing it all at once.
Also around this time I was having massages of my back, neck shoulders and head which were pretty intensive as the pain and tension there was really getting unbearable. My head felt so tight and painful and my scalp was really tender to touch in places (always is a bit, but was getting very bad and more widespread). My neck felt very painful and weak and was clicking in a very disturbing way low down my cervical spine. Shoulders and upper back, well, the usual. A couple of days after the third massage I felt the tension really lifted and I no longer was taking painkillers every single day. The clicking was also much less frequent – I think the muscles were not clamped so tight around the joints. This was also the time that I started taking the Diltiazem, but I did not think it would do anything and apart from the pain/tension improvement I did not feel any different. A few days later I had my first acupuncture appointment.
It was another couple of weeks before I had the second appointment and did the Tai Chi (and “broke” my back). Then another week until the third, when I started to use the Alpha Stim (see previous post).
During the last few weeks I have noticed a gradual increase in what I can do in the day. I am certainly more active, particularly mentally. I am also sleeping much better and dreaming vividly all the time! I have taken the sleeping tablet again briefly when my mum was here and it confirmed what I thought. It does help me get to sleep but once it wears off in the early hours I feel more awake than I would have done without it. Very odd. As it is I am sleeping much more deeply than I have for a long time with no drugs at all. I am still getting up several times for the toilet but am just getting back into bed and back to sleep easily. I am also sleeping deeply most days and later in the day than I was. It is working for me despite being bad in theory to sleep late in the day (sleep hygiene blah blah). I think the higher dose of Gabapentin is helping to control my nerve related pain and discomfort which used to flare up every time I got out of bed (or in!). It is still there but milder and as long as the bedding is smooth and flat underneath me (a constant battle) it is usually ok. I think with me Gabapentin takes a few weeks to reach it’s maximum efficacy. When I first took it, although there was some improvement it was not for a few weeks that it really felt more consistent, and the same has happened with the higher dosage.
I think perhaps the added activity is also helping the sleep. I am being careful not to overdo it, though some days it is hard to stop pottering about with little things, as they all add up. I have at times got that “wired” feeling of having over-stimulated myself, but I am also recovering more quickly. I have had the odd bad day but overall it’s a very positive trend.
I even went out into town (being pushed in wheelchair). We went to three shops one evening and I did practically all my Christmas shopping. Then we went for an Indian meal before returning home! It was really great to have a meal out and I felt pretty good throughout.
I hate department stores (it was only them that opened late) but I did not get over-hot and being in the wheelchair made it much better for obvious reasons (like being able to go fifty times further!) but also in terms of navigation, which I am rubbish at in shops. It is so nice to allow someone much better at it than me to push me around: she knows where the lifts are, where the exits are, how to best get from one shop to another etc. So much more relaxing!
I also find the decision-making hard but as the shop was not too busy or noisy and I had a list of people to buy for, I just stayed calm and focussed and got through it in no time. Such a relief and great to avoid lots of deliveries coming to the door at random times when I am in bed in the day.
The most amazing thing – yes I am getting there, waffle waffle – was the payback… or should I say LACK OF PAYBACK!!! I rested the following days, but was still pottering around more than I felt I should following such a big trip out. Day three I really felt it would hit, but it didn’t really. This is unheard of in my world. I was only saying to someone more moderately affected than me a few days before that unlike her, I am rarely surprised by how ill I feel, as it is predictable: do something slightly more than usual, second day, bam – feel awful. I take a few more days to rest, then carry on with the usual routines. Even my IBS did not flare up too much after the meal out, which again, it usually does even if I am careful about what I eat.
So I was on cloud nine about that. It really made me feel that the improvements are solid, even if I have not felt quite so strong since then. I feel an upward trend again at last. I am kind of hoping that most of the improvement is down to the new POTS drug. It has been about a year since I felt any real improvement in function from Midodrine, the other drug I take for POTS, which has plateaued really, despite some dosage increase. I also tried Ivabradine which I was not sure about in terms of improvement as I had such severe neuropathy at the time I was in a lot of pain and not sleeping well at all, so I could not tell. I could not get a prescription for that in the end anyway.
If the acupuncture is helping too, then all to the good. If I can get a decent improvement in pain through that then that will help me hopefully to move and relax my muscles more and increase my function again. I like to think so anyway. I feel a little hope creeping in…
Went to the new GP surgery today to meet a second GP from the practice. I was told to see this one about the progesterone pill that I take long-term to stop my periods. I was a bit worried that she would not be understanding and want me to change what I take or even stop me taking anything. This would be very bad for me as it has really changed my life not having the awful effects of my hormonal cycles to deal with all the time. It had a huge effect on my functioning and energy levels for almost the whole month.
She was lovely though. She spent lots of time with me even though she was running very late already, and said that although she would contact the specialist I originally saw who put me on the pill just to check that it was ok for really long-term use, she could see how much good it was doing me and that changing it would potentially cause me a lot of disruption and problems managing my condition.
Seeing as she was so nice I took the opportunity to ask her about referring me to a pain clinic, while making clear it was not urgent and I did not want to make her run even more behind. She seemed happy to deal with it and genuinely wanted to do all she could for me today.
She firstly suggested that the CFS specialist who I have been referred back to might be able to help me and he could decide if I really needed to see the pain clinic or if his team would help. I said that firstly that would make the timescale very long as there is always a three-month wait to see him. Also I had not had any help with specific pain issues from them in the past, even the physio gave me advice that was not tailored to my needs and severity.
She listened to me and the kinds of pain that I experience and said she did think the pain clinic would be best. She said she needed to get more information and look at my notes more before deciding where to refer me to, adding that there was a pain clinic held at the GP surgery which has short waiting times and that I may get to go there. She is going to ring me soon to let me know. I was very impressed with her attentive approach and willingness to commit even more time to me outside of the appointment.
When we discussed the pain issues that I have, including bladder discomfort, I said that I felt that everything was more sensitive and more painful due to neurological problems, rather than the bladder (or other body part) itself, and she said “yes, you are right, processes of central sensitization (can’t remember the actual sentence, but something like that). I nearly fell off my chair. A doctor who is knowledgeable enough about the mechanisms of ME/CFS to engage in a conversation about such things and is also happy when I express some knowledge about my own condition! Very rare in my experience.
She also knew what POTS was and did not assume my partner was my mother – bonus points all around!
I feel like I have struck gold, but am also aware that she is not easy to get an appointment with. She specialises in reproductive stuff, which is why I was sent to her for the pill issue so I may not be able to see her regularly. Also she is very popular from the impression I get. I hope that if I have anything complex to discuss I will be able to see her though, if not all the time. I do think she would be a good person to ask to do the DLA form evidence – she seemed very thorough and I think would treat it with due importance. I would gladly go in for a 7am appointment (if they did them) or wait a month to have another appointment like this one!
I feel today that the leap into the unknown I took in changing GP surgeries has paid off. The first GP I saw was nice, but this one really seems a cut above anything I have experienced in a decade or so.
I was planning on writing a thorough review of the book How To Be Sick by Toni Bernhard, but I am taking advice and guidance from Michael Nobbs in his new ebook Sustainable Creativity and I am keeping my tasks simple and manageable. If I write a short review I can get it done today and have a sense of achievement, rather than not finding the energy for days/weeks and having the task hanging over me. He also encourages us to not care if something is not perfect, allowing us to get on with our day. This review will not be well honed but I hope it will be good enough. I am not even going upstairs to find the book to refresh my memory before I start!
In How To Be Sick, Toni combines the experiences and challenges that chronically ill people face day-to-day with Buddhist teachings in a very effective and seemingly effortless way. It does not feel like the chronic life is being forced to fit into a paradigm, it is as if these two things were meant to be thought about together.
I found that I did resist buying this book, despite the good reviews. As someone with very longstanding ME/CFS I have become wary of self-help advice. Often it is forced onto us, inappropriate, claiming to cure, patronising, making assumptions about us and so on. Or we seek it out ourselves and get “self-help fatigue” on top of the illness itself as we work so hard to challenge ourselves, examine ourselves and change ourselves and just end up twisted in knots feeling no better, calmer, stronger or healthier. We then feel a failure and I for one no longer take part in these activities. I suspect I am not alone. Who, when chronically ill, has the energy to keep constantly looking at themselves in such an intense manner?
So against this backdrop, Toni has bravely approached the problem in a new way. It really does feel so refreshing and when I actually picked up the book and started reading I felt no resistance. It is written in an easy to understand, absorbing, humourous way (I laughed out loud at a bit about Sarah Palin!). Most importantly she takes us on her personal journey and explains how difficult she still finds some of the practices, rather than saying she has reached some level of perfection (enlightenment!) and therefore effortlessly copes with all day-to-day stresses and restrictions on her freedom. Of course she doesn’t, she is only human, and that approach allows us all to have a go, Buddhist or not.
It is really refreshing to read the examples she gives as I had also found myself in these exact same situations. Perhaps it is because Toni has ME/CFS and POTS as I do, that our experiences are so similar, but I expect that actually the experiences of chronically ill people are more universal, regardless of our specific conditions, than we realise. Which begs the question: Why is our experience so marginalised and misunderstood, even by people whose job it is so see us regularly, ie medical professionals? (See previous posts for where this issue is coming from for me!)
I have occasionally done Mindfulness of Breathing meditations over the years, in phases. I first started before I became ill when a monk came onto campus once a week when I was at university to do a guided meditation. I found very powerful and energising at the time. While it is harder to do in a body which is constantly uncomfortable and without your own monk to guide you (!), I have found that being guided by a recording is also good. The book made me see this practice in a new way and I feel encouraged to keep doing it and getting more and more from it.
Lastly I would like to say that even if you know nothing about Buddhism, this book is very accessible. It has sparked an interest in me to look at it further, especially the specific concepts that Toni works with in the book. (Michael Nobbs actually posted a link on his website to Audio Dharma and a talk about Embracing Imperfection, which echoed some ideas from Toni’s book. I just went to find the link to post here and see that Toni has done her own recording on the site! Small world.)
What really felt encouraging for me was that although I had not heard of many of the Buddhist ideas in the book, I found that I could relate to the practices. I realised I have been doing some of them by myself. For example, I do enjoy the joy of others more than I perhaps did at the start of my illness, even when I cannot participate in the source of that joy (although there are some people with which this is easier to do, than with others who make no acknowledgement of your own situation! I still have work to be done.). It is nice to feel that you have made some progress yourself inadvertently just by living with illness so long.
The last couple of week I have changed some medications:
I have upped my dose of Gabapentin, which I am taking for nerve pains. These are mostly occurring on my lower legs, but also affect thighs, arms and other places on occasion.
I have recently (re) developed Trigeminal Neuralgia despite being on this drug, which is listed as one which helps. I had it about four years ago, in conjunction with forehead paralysis which meant one eyebrow did not rise (!) though it felt like it was doing so… a bit odd. This time my eyebrow is thankfully mobile but the nerve pains, while not severe, are quite persistent and annoying. I cannot lie on one side of my face much which limits the already limited positions I can lie in in bed due to other pain.
I have stopped taking Eszopiclone, a sleeping tablet. I am stopping for a month on doctor’s advice to evaluate how I am without it as I have been taking it for several weeks with mixed results. I have had two stern warnings from GPs about the risks of addiction and they say it is usually only prescribed for a two-week period. Well, I have not experienced any issues with stopping it which is a relief and good to know. I think I will just take it when I am having stressful times or when I have things planned that I need to be functional for, like holidays/Christmas or visitors.
It has helped me to sleep in some ways. I was getting to sleep earlier on it, getting up for the toilet only about 2-3 times as opposed to many more previously. I was still waking in the early hours and sometimes having trouble getting back to sleep, though it was perhaps easier than it is without sleep medication which was less stressful. The real issue for me was that I did not feel much better in myself in the daytime for supposedly getting more sleep. Why pollute my body and risk addiction/withdrawal in that case? I will see how things go. It is useful to have something to fall back on if things get really difficult for short periods.
I have also started Diltiazem for my POTS symptoms. It is a calcium channel blocker, though I do not know much about it. It is listed as a drug that can make Orthostatic Intolerance worse (!) but I am only on day two and it’s too early to say either way if it will help me.
I also asked the specialist at the hospital about my increasing pain levels and painkillers, as I am taking more and more these days, though still being fairly restrained. She says to focus on paracetamol and she suggested going to a Pain Management Clinic. I don’t know what they will be able to help me with, but I am willing to give it a chance.
The most exciting thing for me today is that I have just made an appointment with an Acupuncture practitioner. I saw him when I previously had Trigeminal Neuralgia and he sorted that and made my frozen eyebrow move again as normal in just 5 sessions. It moved a tiny bit more each time!
After my disappointing appointment with the specialist earlier in the week I am looking forward to his calming, attentive and holistic approach to my health. He is very well-regarded and very skilled as well as quite a character! I really enjoyed seeing him before and hope he will have a healing and de-stressing effect on me. I primarily would like him to focus on my trigeminal neuralgia and headaches/tension in neck & shoulders as I think they are all connected. I hope he will be able to help with neuropathy and other pains too. He also used to try to help me with temperature fluctuations and I think there is plenty for him to tackle in the long run but that perhaps it may be worth taking a set of symptoms at a time as it is easier to track progress that way. I will see what he thinks.
I have had a few massages recently as the pain and tension in my head, neck and back has been getting really bad. I have avoided them due to my nerve pain for a long time – just lying on my front was impossible even in soft clothes but better now that I am taking Gabapentin. I still would not be able to have a full-body massage (do NOT touch my legs!) but my back is possible. I have tolerated the massages pretty well and they have helped, but only in a very temporary way. I hope the acupuncture will be a little more long-lasting in effect.
The title is to warn you all that this is not important stuff, only I feel I should make a record of certain symptoms fluctuations and patterns regarding medications so that I can make some sense of it (potentially) along the line. It is a giant ramble so unless these issues apply to you, don’t bother reading! I have bolded key themes, for easy skimming 😉
(There is a good link to a webinar about POTS and Orthostatic Intolerance at the end if you want to understand it better.)
Since my holiday my IBS has been in a general flare – main symptoms being my usual issues of increased wind and bloating/abdominal pain and more frequent “happenings” (shall we call them?). I have also had a bad bout of diarrhea (though i did eat more veg beforehand which did not help) and also an evening of very bad nausea (though i did narrowly avoid being sick) and this is rare for me.
While on holiday things were actually pretty good in this department, but things have got gradually worse. The only thing that has changed is that I started to take Eszopiclone – a sleeping tablet – every night from the start of the holiday. The reaction was obviously not immediate or dramatic, but I wonder if this medication is irritating my digestive system. It does say on the packet that it contains wheat starch and lactose – but surely i cannot be so sensitive that half or sometimes one whole (small!) tablet a night can do this? I think I am more susceptible to starches. Dairy products do not do me much good but I do eat some cheese, so that amount of lactose really should not be an issue. Or, of course, it could be the drug itself or just a random flare-up. I have not changed my diet in any significant way (the chance would be a fine thing!).
So, while not a major problem at this stage, it is a significant change and not one I am happy about.
That said, my nerve pain/itching has been generally improved since the holiday and I wonder if sleeping better has helped this. This Neuropathy, as it is most recently diagnosed, was very bad in the weeks before the holiday, and during the holiday itself. I have not yet heard back from the specialist about upping my dose of Gabapentin, which i take for this, but it has calmed down a lot anyway. I would still like to take a higher dose as it is still a big issue for me and I have to stick to certain rituals to avoid it which i would like to relax on, but it has been nice to have a general reduction in symptoms. Also perhaps the slightly less hot and humid weather may be helping.
So, my plan of action is to stop taking the sleeping tablet (did not take last night) and see if after 10 days or so anything has improved “down below”. I may have to start it again and re-stop to confirm the link as life is never that simple with these illnesses. Also I am going to research and see if there is a brand that does not contain the wheat starch, though that is a long-shot.
I have also stopped taking my antihistamines since the holiday, in a gradual fashion, on advice from the dermatologist and POTS specialist, who both agree the Gabapentin is the best drug for the symptoms. I can still take an anti-histamine if i get a bad attack of itching/pain but am not taking them on a regular basis. I have been very surprised that this reduction has not caused a flare-up in symptoms as when I started to take them I did experience an improvement. I have wondered if that improvement was due to the soporific effect of the night-time antihistamines, as I slept better in the first weeks of taking them that I had done for literally years. I think better sleep could easily account for reduced nerve pain, and I wonder if that has happened over the last few weeks on the new sleeping tablet also, as the gabapentin alone did help but things improved again with better sleep.
Another thing to note is that I do not think my days are dramatically better since taking the sleeping tablet. I think i assumed I would feel much better and have more stamina if I slept better. This has not really happened, but I would say my mood and stress/anxiety levels are improved. Being awake in the early hours of every night usually with neuropathy and other discomfort (bladder/back pain), as well as getting up much more for the toilet every night was hard to cope with. I have enjoyed getting up less and usually getting right back to sleep even if I do. I had hoped to phase out my daily nap when sleeping better, this has also not been as easy as I would have hoped. Some days I feel I have really slept well and when I go to lie down I do not sleep properly, just rest. This is good for “sleep hygiene” though I have come to realise there is only a certain amount of control I can have over that. I have tried to do everything right for years and my sleep has not been good quality. Most days I still need a nap, only an hour of actual sleep, though I do lie there for longer in total. In an ideal paced world maybe I could avoid it but in reality there is always something to recover from, rest for etc.
My cognitive function has been quite low at times and I wonder if this is a side effect of the medication. I don’t always wake up with a hangover feeling as such, or no more than is quite usual. I would expect better sleep would make me more mentally alert but I have not found that at all! When I have taken the drug I do find that I do not remember things that have happened in the night and cannot speak/think clearly if I try to have a conversation if I wake up in the middle of the night… but I was like that last night without the drug so maybe it is just a symptom of being really asleep!
One other thing to note is my neck – it is literally a pain in the… neck! It has been very weak for a long time and the muscles on top of my shoulders where it joins my neck (an anatomist I am not!) are constantly tight and painful. The smallest thing seems to trigger it into pain. This is not a new problem but it has got worse. I find the positions that I can hold my neck in comfortably are limited to about one, sitting with my chin tucked in, basically (lying down on my back is also good). Any activity where I have to hold my head in any other position, or move about too much can trigger it off. It also clicks in a nasty cracking way which cannot be good but feels necessary. I cannot think that it is just deconditioning of my muscles as if there are any muscles that are constantly in use it is the ones holding up my head! I do not lie in bed more than 12-13 hours out of 24 so they are being used quite a lot.
Regular readers will know that I have tried an osteopath and that did not work out, so I do not know what to do apart from mention it (again) to the ME/POTS specialist on my next visit. Upper back/spinal issues have been a constant issue for me for the duration of my illness, and yet are given no attention by the medical profession (I did get a useless physio referral once or twice). Hmm. I cannot help but think that spinal health is important for those with neurological problems, seeing as all the signals/messages have to go that way, but as we are always being told: chronic pain is not necessarily a sign of injury or anything being wrong… Hmm, double hmm.
Lastly, just to note that I have now run out of Ivabradine, the drug that the specialist wanted to try me on to slow my heart rate down to help with POTS symptoms. I am trying to challenge the decision of my GP (this is a family doctor, “general practitioner” for those not in the UK) not to prescribe and have asked the specialist to talk to the GP to see if they can agree something but I have yet to hear anything. I think it did help my heart be a bit calmer in response to standing and I think it made it easier. I have noticed that I have had a few more quite bad and surprising turns from doing quite small things in the house which may be due to stopping that drug. I have noticed my legs are often quite purple when I sitting, though it could just be the warmer weather making things sluggish or that I am noticing more (I tend not to look!). As always, hard to tell.
If you want to know more about POTS and Orthostatic Intolerance for people with ME/CFS in general, I recommend this webinar from the CFIDS Association: http://www.youtube.com/watch?v=5iF30TVLaRE . As well as explaining what is going on in the body there is a lot of info about research that has been done, what can help and details about different drugs. Very comprehensive and perhaps useful to take to your doctor (there is an information sheet to go with it: http://www.cfids.org/webinar/cfsinfo2010.pdf) if they do not know much.
I went on holiday a couple of weeks ago, and overall it was great! I was a little anxious about it beforehand as so many symptoms threatened to put a damper on it. Also I was feeling quite low in mood and really wanted it to be good – that kind of need is a dangerous thing.
My and my partner went on holiday, with our dog, but also a friend joined us half way through and stayed with us a week so we had some time with her on holiday and then at home as well, which extended the holiday vibe – so a good ten-day holiday for us.
We rented a cottage on the coast, actually very close to home, as travelling is something I struggle with and a long journey would have been something I would have to recover from once I arrived. Plus, if things were really bad, we also had the option of coming home again easily. It was lucky in the end that we did that as between booking and going I got my wheelchair. On the way home (because our friend had joined us mid-week) my partner had to make two trips as our little car was unable to take all our stuff, plus wheelchair, dog and three people.
The cottage was “bijou” – small and beautiful. It had a cabin-like feel with long painted boards on the ceiling and several times after being pushed in the wheelchair (which makes me feel pretty spaced out), or just when feeling a bit unsteady in general, I really felt like I was on the ocean wave without my sea-legs. There was a nautical theme with lighthouses, driftwood and shells aplenty and it was lovely and felt very “holiday”.
The beds were pretty comfortable. I was very worried about that before we went and had even rung them up to ask about them, after the very bad bed experience on our last holiday the winter before last. I did have a lot of nerve pain while i was away, both in bed and just randomly in the day which was quite draining and disruptive but I did sleep pretty well as I have started to take Eszopiclone and I think it really helped me to sleep in the different surroundings and with the nerve pain, which certainly allowed me to do a few nice things while away.
So what did we do?
We travelled up on the Saturday, but did not leave home until 3pm as the cottage was not available until 4pm. This worked quite well as I usually am not up to much until then and need a midday nap anyway. We got there and had a quiet evening but we did go along the road to find a view overlooking the sea before we settled down for the night. You have to see the sea, right? (It was not this late when we went that first day, but this is the same view).
The village streets were far from wheelchair friendly and I had to get out a few times when we went about (not to mention the time when I flew through the air and landed on my feet when the wheelchair came to a very abrupt stop in a big hole between some cobbles… I am a human cannonball… I was fine but my partner developed a huge bruise where her foot had hit the tilt bar at the back – ouch!).
On the Sunday it was really sunny and lovely so we went for a wheelchair walk, first along the river, which was the perfect width of path and really easy (except for the massive steps at the end), then down to the beach. This was not very easy as it was a steep hill and we didn’t properly think through the return journey (what with our sense of adventure and holiday excitement!).
The beach was lovely and warm. We (well not me, to be honest) dragged the wheelchair down the beach with us so that we could get to the water without leaving it miles away. I threw caution to the wind and decided to paddle. My nerve pain is worst at my ankles and is triggered by water and temperature change so it was a bit risky, but basically I just tip-toed so they didn’t get too wet. It was lovely and warm and frankly I would have just gone for a swim if I could have. Lots of people were and it was packed.
After a sit down, it was decided that my partner would take the wheelchair back up the beach and go along the car park and I would walk along the beach to the next path and meet her there. The car park was large gravel and like one big pot-hole so she could not push me along there, so I had to walk and so I might as well enjoy the beach. We hoped the other path would be less steep that the one we came down. The sand was very soft and although I enjoyed the walk it felt much much longer than it looked and it was hard going. I found some nice shells and all was sparkly and beautiful, but by the time I got back to my chair I felt quite awful, weak and POTS-like. I sat a while to get my breath back and let things calm down before I then had to walk more (huge gravel then steep hill!). I managed but it was way too much. On the way back to the cottage we sat in pub beer garden for a quick drink and it was sunny and quiet and I was comfortable sitting in wheelchair and felt ok. I really needed the “tonic” part of my tonic water! By the time we got back to the cottage though I had completely crashed. Just lay on sofa in zombie mode for some time. We were out for several hours but the time just flew by and we both had a really nice time being out exploring together so it was worth it.
After that I had a couple of quiet days resting and recovering (with a lot of nerve pain), and our friend arrived the Tuesday evening and we went out to the Indian restaurant around the corner, which was really good. I was really careful about what i chose and basically just ate rice with a little bit of the different dishes to taste – it paid off as I had no IBS flare-up afterwards! Amazing! The noise really got to me in there though, and after I finished eating all I could do was sit with eyes closed as I could not even follow the conversation with all the other noises there. We could not stay long. I felt better once we left and got some fresh air.
On the Wednesday I still did not feel too good but after an afternoon nap we went to a local second-hand bookshop. It was only ten minutes drive and was fully wheelchair accessible so I knew it would not be too hard. I was concerned that my brain-fog would prevent me from being able to focus enough to choose anything, but I found 4 books which all look really interesting:
The Diary of a Dying Man by William Soutar – (This is available on Amazon, I have not chosen that link, but it’s easy to find). I have read the first few pages and I think this will be a really interesting book. It is witty and also has already come up with some parallels with my life; early on he discusses various things people tell him will do him good (pills, potions, foods) and he says that he would be taking things constantly if he listened to all of this advice. I know that feeling!
Longshore Drift by Katrina Porteous and with Linocuts by James Dodds – this is the first book I really focussed on when I went in. It was on a little display and I cannot believe that no-one else had grabbed it before I got there. A little gleaming gem. The poem is very interesting but it is the linocut prints that have had me reaching for the book several times while away and also since I got home. They are just amazing and there is always something new to see. As I have tried to do stamp carving (I don’t know what to call it really), I can see how he has chosen which parts to cut to make the black image/lines and it is interesting to observe his techniques and choices. The detail is amazing; as is how simple lines can do so much.
Southern Mail/Night Flight by Antoine de Saint Exupery – I have only read Le Petit Prince before, but this is described as poetic and it sounded interesting, though I have never really been interested in flying… But if birds do it, then it may be something I can get into!
The Memoirs of a Survivor by Doris Lessing. This, she says, is part autobiography; but it seems from the description to be a kind of dystopian novel and by far the most frightening-sounding book I have chosen! She is someone I have heard of in terms of her feminist and political views, but I have never read anything she wrote before, so I will see how it goes.
That evening I stayed in resting while they went to pub for a while. It was nice to have much-needed quiet time but when I got lonely they came back for a chat before I went to bed, which was really nice.
The next day, Thursday, the sun was out again so after eating breakfast outside on our tiny bit of decking, I walked down the hill (funny little path through people’s back gardens) with my friend and we went to explore the estuary.
We took pictures of boats and I tried to do a little sketching but it was not really the best circumstances as it was a bit on the parky side with the cool breeze and also not very comfortable/relaxing to sit. Sand was too wet/squidgy so we sat on a concrete block for a while. Had to walk a little way up a hill (very slowly!) then rang my partner to come get me with wheelchair. We stopped for a cuppa in tea shop on way home. I had a big sleep then we watched DVD of The Girl With The Dragon Tatoo, which I really enjoyed. I was the only one who had not read the book, but they said it was a good film version of the original.
Friday I felt pretty rubbish. We tried to go to the pub and play cards in the afternoon but it was too noisy – first a large group of middle-aged women squawking and screeching in hilarity at each other, then when they left another gang of younger people who all laughed really loudly together in great bursts. I felt a bit sad that I can’t enjoy being in groups like that anymore. I could not focus on my cards while that was going on, and it was really uncomfortable for me, so we had to leave. We played a game later in the cottage, but I was still not feeling too hot.
Saturday we had to get up early to leave by ten. My partner had already been home and back again by then with the first load. We actually left at 9.30! I tried to rest once home but my body/brain had obviously become fairly confused by it all and gone into emergency mode. In the afternoon and evening I felt hyper and weird and could not rest, adrenaline taken over and although I knew it was not real energy and I tried not to do too much, I did unpack and tidy up a bit as I knew I wouldn’t be able once it all caught up with me and it is nice to get sorted.
The next couple of days I was in bed until mid afternoon both days and not feeling great but we managed to have some gentle chats, watch a bit of TV and have half a game of scrabble before my friend left early on Tuesday morning.
So it was a mixed bag, but with some really nice experiences. I would have like to have been able to go to the beach a bit more but the inaccessibility mixed with the torrential rain at times (I forgot to mention that!) meant it did not happen. We could not drive around the village much as the parking was so tight we could not move the car much at all, which is the only reason I would not stay in that actual cottage again.
Since the holiday I have been feeling generally pretty awful much of the time, and my cognitive function has been very low for me which has been a surprise really. I wonder how much is due to the new sleeping tablets I am taking. I am going to have to experiment with them. Writing this has taken f-o-r-e-v-e-r!!!
I have however been out a couple of times since being home again, just taking advantage of the fact that my partner has been around a bit more and also not wanting to waste any last sunny days before the end of summer, which feels somehow imminent and over much too quickly. We went into town with the wheelchair, which made it the most pleasant trip to shops I have had in years; it really helped and I bought a few things while I had the opportunity to try things on – it was actually fun! Also we went to a local lighthouse to enjoy a sunny afternoon and just sat and enjoyed watching the waves and feeling the warmth. A gentle but lovely trip out. I finished my camera films off at the lighthouse so I am sending my holiday snaps off to be developed soon! I did not take as many as I would have liked, but I hope there will still be some nice ones there.
Well, for the first time in a VERY long time i had a proper night out! I have been out for a meal once in the evening in the last year with a friend, but it was a very early meal. I have been out for some afternoons but am usually home by 6pm. The last time i can remember being out late is my sister’s wedding: May last year. So this was a big deal!
My partner goes out to concerts sometimes and when buying tickets always asks me if i think i could come. I always say no, as previous attempts have resulted in trauma at the event, or more usually a wasted and expensive ticket. This time i thought maybe it was possible as i was feeling a bit better at the time of booking. Also with the new wheelchair i would hopefully be more comfortable/supported and have less pain during and afterwards. The venue is nice, familiar, small and accessible. Plus we got one ticket free as a disabled person plus carer so there was less pressure. All good.
The day before yesterday i felt really awful, very dizzy and light-headed with the weakness that accompanies that POTS state. I was in bed most of the day. Yesterday i woke up feeling better but still spent the morning in bed and did as little as possible until getting ready to go out. I felt ok and it was so nice that my body was co-operating.
The concert was really good. I did not find the noise too loud as the acoustics are great at the concert hall, it is a clean sound. The last concert i went to was in an arena and it was so loud and bad quality that i was actually reduced to tears – it was so painful and i could not believe all the other people there looked fine and like they were not noticing anything wrong! I did manage to stay (just) but i found it very uncomfortable. I knew this time would not be the same but i took ear plugs anyway! I was so pleased to be in the wheelchair as the chairs there would have been no good for me at all. So glad i have it at last.
We had a good view and when Eliza Carthy came on stage i literally started crying (for a good reason this time!). I was suddenly overwhelmed to have made it out, to be there at all. All the good memories/feelings associated with her and the times i have seen her perform in the past came over me in a flood and i just wanted to give her a hug to celebrate seeing her again (of course i did not, if only because the stage looked too high to scale!). After a little cry i felt more able to relax and enjoy the concert without all those feelings getting in the way; more like a normal person would enjoy it, rather than a fun-starved ill person! The lyrics at the start when i was crying were something like: “thank you lord for letting me live another year” and i felt my own gratitude for being able to go to a concert again.
The concert was called “Murder, Misery and then Goodnight”, after a Kristin Hersh album. She was there, as well as Handsome Family, Tim Eriksen, Eliza Carthy and Howe Gelb. It was ” an evening of the darkest twisted murder ballads” which sounds miserable, but they actually sometimes had a darkly comic edge to them, and there were lots of laughs. It was part of an Americana festival and the tone was a mixture of folk and blues/gospel – i don’t know how to describe it; a bit like Oh Brother Where Art Thou soundtrack! There were some great songs where we all sung the chorus and in that small venue it worked really well. A man played a saw, as well as some other odd percussion things and it worked really well with the sinister lyrics. I was amazed!
Tim Eriksen started the concert standing at the front of the stage in a cloud of smoke holding just a tiny battered book and just sang in that real southern style, completely unaccompanied and it felt like being at the theatre! I knew then it was going to be a great night. What a powerful start. He looks like a really interesting artist too, i had not heard of him before but his biography is very interesting and varied and he worked on the music for Cold Mountain and helped teach the actors to sing for it, apparently! You can hear a bit of him here.
Eliza Carthy was just amazing. My partner says that they all lead on a similar number of songs, but it seemed like she had a much bigger input. I think this is because she was able to join in with other’s songs, either to sing or play the fiddle as back up to the lead artist. Sometimes it was clear that this had not been practiced and she just joined in, tentatively at first to get a feel for the chords and song then just went for it – amazing to watch. There was a spirit of just joining in on each other’s songs, having a jam, but some looked more confident to do that than others. Her own songs often started with just her voice, singing to a light foot tap and it was spine-tingling, then the song would gradually build to full instrumentation. I rarely listen to her music at home (I only listen to a very few select artists actually as i often find it hard to listen to music, and can rarely multi-task – i.e. listening to music is an activity in itself, not a background thing which limits when it can be done) but i am a huge fan. Her talent and what she has done to shake the dust off folk music is admirable. If she is playing near you, and you are able ,go see for yourself! Even if you are not usually a folk music fan, you will not regret it. Quality like her do not come along often.
I felt the concert was really long, in a good way, I felt that the effort of going was worth it as they gave us so much, so many songs and a great performance. It filled me up with good experiences/feeling that i can draw on for a while. It also gave me some confidence that I might be ok to do the odd different thing while on holiday (coming up in a few weeks) as i have been worried that i will just feel so awful the whole week it will just be a change of walls rather than much in the way of new experiences. We shall see. Anyway, i am so happy and grateful that i went out last night, whatever comes next.
Went to the hospital again today to see the POTS specialist.
Firstly she has started me on Gabapentin for pain and itching – she had mentioned it last time and I am so glad she was still keen for me to try it as I have read about it and talked to people who take it and it does seem a fit with the problems I am having. I asked her if it is basically that I am having symptoms like Fibromyalgia (FM); that it is neuropathic pain and she said yes, and that it is common with CFS and that an additional diagnosis would not help me (there are additional treatments recommended for FM so there is no point).
This brings me to the POTS medications. There are no treatments recommended specifically for POTS, like ME/CFS and FM (or is there one for FM in the pipeline? I forget). She started me on a new drug last time which is an angina drug (Ivabradine) to slow my heart rate to see if that helps. I am unsure if it has helped but I think that it possibly has helped a bit. It has been hard to judge as it is a small dose and also there has been so much going on with my itching, pain and sleeplessness that I have barely been thinking about my POTS symptoms (but that may be a sign in itself that it is working!). But all this is now irrelevant as my GP has said I cannot take the drug as it is not a recommended treatment for my condition and it won’t fund it, whether it helps or not. Seeing as there are no drug treatments listed for POTS they are basically saying I will not be treated, even if the specialist thinks it might help. This leads to the conclusion that the only reason I AM being treated at all (I take Midodrine, an unlicensed drug that I get through the hospital) is ironically BECAUSE the drug is unlicensed so the specialist can give it to me (I think because it is part of research) and override the GPs who have complete control over what drugs can be prescribed. Apparently even in the US where I thought POTS was much more accepted and treated there are no drugs trialled and approved for it. I see again how very lucky I am to be getting Midodrine. It seems ridiculous that a seriously disabling condition that can be easily tested for and monitored is not researched more widely.
I am happy to report that Gabapentin is an expensive drug (I want to make them suffer now, ha ha!) but that they cannot deny me that, as it is listed for neuropathic/nerve pain AND itching. She said if it helps I can then cut down on the anti-histamines which would be good, I don’t want to take quite so many things!
One good thing is that she is putting a note to the GP to try me on a sleep medication (I did not catch the name) if my sleep does not improve once the Gabapentin starts working, so it is nice to have that option if I need it, without having to wait for months for the next appointment to discuss this.
I asked if other GPs allow people to take the Ivabradine for POTS and she said my GP is the FIRST to deny the patient access to it when she has recommended it! I am shocked about this and asked how I could challenge it. She said I could go and talk to them, but apart from that there is little I can do, except change GP! I am not happy with my GP but I always thought maybe it would be the same anywhere. I would consider changing (as I have to get a taxi/lift to the existing one anyway, albeit a very short ride) but how would I know if it would be any better before I got there? As I cannot say for sure that the Ivabradine really would help me (as I have not been allowed to give it a proper try) I do not have a very strong case to argue anyway… I also worry that a new GP would see that I had been refused and think I am going to be a troublesome new patient to have and not want me and my mammoth medical files transferred over to their practice. This is all about money. I don’t think they can say no, but there is little point in moving if their attitude is as negative towards me as it is where I am. It is a concern in these economic times. I am unhappy that my GP seems to be saying no when others say yes to this drug. Should they have the power to choose, and operate a “postcode lottery”? As it is not the sanctioned use of the drug I suppose it is down to their discretion, but when there are no drugs approved for a condition where does that leave us? Without treatment is where. Apparently there is little interest in researching this rare condition (but would it be seen as so rare if people were actually diagnosed properly?). It it not about helping people who are suffering from the most disabling conditions, it is all about making money, after all.
Well I cannot hold back any longer in a little scream about my continued itching! Arghhhhhh! It is driving me up the walls.
Quick background in case you have not been concentrating!
Had itching for ages with no rash to speak of (last couple of years getting worse and worse)
Went to dermatologist – got diagnosis of “possible physical urticaria” – got antihistamines – took them for 6 weeks
Went back to dermatologist – itching has seemed about 50% better – so she changes one antihistamine, adds another and ups the dose of the other. Now i am on 3 different types.
Itching has been getting worse again and i really think just about as bad as it ever was.
One great thing initially has been that the night-time anti-histamine really helped my sleep, and i felt better some days than i had for a long time. I realised that although i sleep a lot i am not getting good quality sleep and this is certainly not helping how i feel every day. Unfortunately this has pretty much worn off, despite upping the dose. I am now wondering if the better sleep was actually all that calmed my itching down and it is nothing like a normal itch at all!
The warmer weather may be contributing, but i have no idea why it is so bad. It never went away but it has got back to the point of hardly ever not being there. In between proper attacks it is hovering and threatening. For example, last week i was wearing some thinner pyjamas, lovely cotton like a bed sheet, nice and smooth and not irritating at all. I also was wearing my slippers that go up to the ankle, also very soft. There was no gap between them. I opened the window as it was a sunny and warm day and just the draft from that one window started my lower legs off, THROUGH the fabric of my pyjamas. I mean, really i feel like there is no safe situation and it can go off at any time, however careful i am. Bed is a nightmare (you know, touching the bedding is hard to avoid!) and it is affecting my sleep. Don’t even get me started on bathing and shaving my legs which is awful but if i don’t it is also a bristly itching nightmare. I have tried a light-based hair removal system to try to rid myself of leg hair for longer periods and it has not worked yet. I am beyond fed up as it cost a fortune. I am still giving it a go for now.
So, i have one week to wait until my next hospital appointment with the POTS specialist, who talked about Gabapentin on my last visit. I am hoping she is still willing to try me on that and that it might actually help with this itching pain. I am strongly of the opinion it is nerve-pain or over-active pain signals or something like that, so this drug could help. My skin is ultra sensitive to touch, so much so that it can be like an electric shock to have something brush past me. It is not just my startle reflex, which is also a bit over the top, it is my skin. There are also very sore tender points on my skin, often like a small lump or knot under the skin and this is often where an itch seems to originate, above the site of the internal bruised-feeling. My back is also really sore and affecting my sleep too. My arms ache and my wrists cannot bear weight as they hurt. These pains seem to be worse when i have not slept, and also when the itching is at it’s worst. The connection, it seems to me, is neurological. I think you can see i am pinning many hopes on this drug.
One other thing is that there does seem (after a browse online) to be some connection between Dysautonomia (POTS is a form of Dysautonomia) and Hives/ mast cell disorders. I don’t really understand it but i think i will ask the specialist what she knows about this too next week. (Mast cells release histamine when they break down and this creates itch – this should, however, be helped with antihistamines!) Does anyone know anything about this?
If Gabapentin doesn’t help i do not know what to do next. I am not sure the dermatologist has any other ideas. I could stop my medications and see if any of them are contributing to the problem, but I really need them and the thought of stopping them, even for a short time, fills me with horror. We have our week away on holiday booked in next month and I cannot mess up my medications and threaten that. I can only hope the itching will have improved by then, or it will not be as much fun as I really hope and need it to be!