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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…

I have, in recent weeks, been to have acupuncture three times. It has been a really positive experience so far. I had been to see this acupuncturist before, several years ago, when I had paralysis of my eyebrow and forehead on one side as well as trigeminal neuralgia in the same area. He sorted that very easily last time so when I had a return of the trigeminal neuralgia I knew who to call.

Thankfully the trigeminal neuralgia seems to have eased off again for now, but he is going to try to help me with pain and muscular tension in my back, shoulders neck and head. We then may move onto other issues such as neuropathy or IBS/bladder issues, we shall see! There are always more symptoms to try to work on, after all.

It is early days and he is having to try things he has not done before as he does not think my body can tolerate a more standard approach. I already feel better but it’s early days and I think some of that is perhaps due to seeing someone who is trying so hard to help me and who really wants to see me improve. I am interested to see how things progress and what he can do to help me.

He has given me some “On-chair Tai Chi” exercises to do (handy video so I don’t have to remember it) as I told him how I just don’t seem to get any benefit from traditional stretching but that I want to find a way to help my muscles unlock their tension. When I try to hold a stretch (even a gentle one, not at full extension) I experience muscle trembles and feelings of fatigue before I have held it long enough to be effective. Also I get twitches afterwards when I use certain muscles. He explained that the gentle, circular and flowing movements of Tai Chi might be of more benefit. I think getting things moving in any way is great. I also like the “stillness through movement” idea of Tai Chi – it’s like meditation.

The first week he gave the exercises to me I felt I could not do them at all. I did them a couple of times to get the hang of them (it’s a very short video, just a couple of minutes of movement) and my back (already hurting) went into major pain and I had a day of alternating ice and heat packs on it, followed by several days before it eased back to “normal” levels. It felt like my back was broken between my shoulder blades! I also doubted that I could sit upright to do them as this can be a challenge on its own (without the addition of arm movements). I usually sit on a big supportive chair that goes up to head level. The exercise needs to be more upright and with space for arms to move.

He also let me borrow a machine called the Alpha Stim 100. It is classed as a TENS machine, but the current is much different (less) and it can do much more (if what they claim is true!). I used it for three and a half days and could already feel a good improvement in my back pain, particular the part that felt broken the week before and was still sore. This pain all but disappeared. Pain all around and above my shoulder blades and neck were also improved, though still present at least some of the time.

The machine has the pain setting and also a setting which is directly acting on the brain waves. I found this to be really pleasant and effective. It lifted my mood and feeling of wellbeing immediately.

After using the machine for a few days I found I could do the Tai Chi much more easily. The Alpha Stim machine died on day 4 (it was old!), so I could not continue with my trial of its long term efficacy, but I have continued to do the Tai Chi daily. I am also meditating daily to keep up my alpha state, but it is a lot harder than with the machine!

I am very tempted to buy one but they are expensive and my trial was a little short! There has been quite a lot of research done on people with Fibromyalgia with positive results. Details of research done and how it works are on the website . I am missing it… I am going to talk to my acupuncturist about it.

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.

Happy day!

Well, I just got back from meeting a new GP at the new surgery I have registered with. She was nice, seemed calm and able to listen. She was reassuring about giving evidence for my benefit claims, saying that she would  ring me to go through the form at the time. She told me to make double appointments and that there may be a wait for an appointment of several weeks if I want to see the same person every time. I said that didn’t matter as nothing is ever that urgent. I did not get into anything much, as I knew it was just an introductory appointment and I think this approach worked well. I am going to try to be a better patient and not annoy them…

She expressed concern that I am taking Norethisterone (progesterone pill) all the time to stop my periods. She said she would like me to talk to a nurse specialist before deciding whether to continue with it long-term or to see if there was a better solution. I am happy with that as I was not sure what the long-term plan is, as when my old doctor brought up the subject, I wrote to him to explain how I saw it and it was never followed up. I hope this doctor will be more thorough, she seems so on first impressions. I don’t want to return to having periods, certainly not if they have the same impact on me as they did, but I am happy to check out the options.

I did ask if there was anyone with other ME patients, or who had some knowledge of it, and she did say that no-one would have specialist knowledge as it is a rare condition. I questioned how rare it is, and said there are more people with ME than MS, and she said MS is rare too! (I am sure they are both rare, but I bet they all know more about MS… obviously I did not say this). I know they won’t have specialist knowledge, but it would be nice if they are willing to learn a little. We shall see.

I will see the nurse, then make another appointment with this doctor to see if we can get to talking about more specific things. I have symptoms I have not even mentioned to a doctor before so maybe I will get to that. It’s early days, but I am glad I have taken the plunge to try someone new. At least I was not spoken to like I was a child; so old doctor 0 – new surgery -1 on that score.

ME/CFS Awareness

ME/CFS Awareness


November 2010