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I am very late in blogging about my last GP appointment, as things have been very busy here and I have just not had chance. It was months ago but I do want to just say that she was excellent again and confirmed to me that even little gentle stretches that are not held long are beneficial and to just give it a try.
I have been doing these exercises (well, 7 or 8 out of the ten, as a couple feel wrong and the other I can only do sometimes due to my shoulders seeming to dislocate a bit) every day for weeks now and I am feeling that they are certainly getting easier. I can hold them for a bit longer and can do more than I could at the start. I think there is a looser feeling, though I am still getting pain in this area. It has been painful for many years so I am not going to get rid of the issue any time soon! I think the fact that the area feels good afterwards, even if it builds tension back up pretty quickly, is a start in the right direction. It feels like it increases blood flow.
Giles explains how to do the exercises on the video so I won’t explain them. I tend to do them in the morning. If the area feels very stiff when I wake up, as it often can, I put a heated wheat bag around my neck for a while before I do the stretches to make sure the muscles are warm and ready. I stretch while being aware of my breathing – stretching on the out breath. I don’t do a full stretch, only feel the first small pull, and go a tiny bit further. I have found that any holding of the position leads to increased pain so if I start at the full stretch (before pain) I cannot hold it long as it becomes uncomfortable. I just find a mid-point so that I can hold it for a little bit longer. In areas the seem to become sore very quickly, I just do several very gentle stretches in succession.
I had terrible headaches when I started these stretches, but this was due to a medication increase. It did however stop me from doing the exercises some days and I stopped for a week or so to test if they were contributing to the head pain. There did not seem any link so I am now more confident and do them every morning. My headaches have improved.
Now that I have seen some benefit from this area I would like to expand my stretches to include other areas of the body. As I said in my last post, I have various sheets with diagrams of exercises given to me over the years by physiotherapists. I just need to find which ones will be most useful to spend my energy on in terms of being useful in pain/tension relief and take it really really gently so as not to flare up my pain. I find that I can injure myself incredibly easily. I get days of pain from very simple things, like leaning over to cuddle someone for a couple of minutes, or holding a shopping basket on my lap when in my wheelchair, even when not really supporting it, just holding my arm in that position… Life feels very hectic at the moment, so I won’t be starting any new exercises just yet.
I do believe there are serious problems in muscle function that are unrelated to underuse of muscles due to inactivity in people with ME. I am just trying to keep things moving and maintain the function that I have rather than necessarily build myself up. We will see how it goes. I just want to minimise the long-term impact of living like this if I can, in terms of secondary problems such as osteoporosis and loss of core strength, which is already a problem for me; which could make things harder than with just having ME/POTS etc. in future.
I have wondered about contacting the physiotherapist from the local CFS service to get help and advice with this, but I have not found them very useful in the past. I wonder if they would do a full assessment of me? Something to think about for next year. In my much more recent POTS specialist appointment she suggested seeing a physio, in relation to my mobility getting worse (I was saying I could not go out without my wheelchair these days and did not think I had dramatically improved since seeing her (though some acute symtoms have improved), particularly in relation to leaving the house/stamina). She did not ask why my mobility was worse or suggest exercises specifically for helping with POTS symptoms. When I asked her a couple of years ago about leg exercises (meaning very gentle movement) she said not to as it was too early… I am sure there must be something I can do, but I am not sure the CFS physio will be very responsive to my needs as he overestimated what I could do when I saw him before, and I am worse now… we shall see. I think an in-depth phone call will be in order before I waste energy going down there for an appointment.
Well, hello again, this is a long overdue update but much will have been forgotten as so much time has passed…
I have been to see the POTS specialist again who changed the dosage of both drugs I am on, but the second one did not seem to agree with me so I have reverted to the original dosage for now and might try again when I am not so busy and can tell perhaps more easily if it is really the drug or just that I am not doing so well for other reasons… I don’t want to dismiss it too readily as I know the options are limited and the lower dose has really helped. Maybe less is more, but my concern is that if this dose is the best for me with this drug, where do I go from here? Can a third drug be added to the mix (the more drugs, the more chance of interactions and negative effects) or do I have to forego the benefits of this one in order to see if something else suits me better? Tricky.
The weekend before last a friend came to visit, and I had a really lovely and relaxed weekend with her. I felt more able to chat and interact than I expected as had had a bad lead up, so it was good. We even did some creative stuff together! I have had over a week to recuperate and tomorrow another friend is coming for a week! Soon after that we are going away to Edinburgh for a week, so the rest of the month is very busy. All with fun things, so I hope I will be up to enjoying them.
I have been waking up really early recently, and sleeping less hours in total due to this. In general I am still functional as I was but am having a lot of symptoms/pain generally, which feels a bit strange. It may just be that I feel I am functional because I am not really trying to do anything big and my activity is limited to the mornings. By evening I feel pretty bad, despite my afternoon nap and I am going to bed earlier and earlier, though not getting to sleep any earlier in general. This early waking may just be the effect of summer or a new phase.
I do need to go to the GP and talk about my pain issues, but that won’t happen until September now. I had a bit of a scare when I forgot my Gabapentin one night, but did not realise I had missed the dose. My nerve pain was terrible and I barely slept. It seems to be in new places and felt worse than I remembered. There was no position to lie in without triggering it, whereas I used to be able to lie on my back with my legs up. I was so relieved when I discovered that I had forgotten to take my tablets and that I did not need to rush to the GP to find something new to help me. I am finding the drug less effective than it was and I wish there was something that would help with the nerve pain as well as the other types. I am not living in constantly bad pain, but certainly constant discomfort and there are periods of the day that are worse than others. It is good to know how much Gabapentin is working, even if it is not perfect.
I have not felt able to write blog posts, nor read many blogs by other people either, which I do miss. I like to keep up with how people are and what is going on but it just feels like there is not enough time/energy available for it all. My best hours in the morning can disappear very quickly doing essentials. I am going to have an internet break during this coming visit and also when away. I am spending a lot of time on facebook (as I can access it on my phone) which I get a lot from as it is my social life, and I don’t want to lose touch with everyone but I feel I need a bit of a break, especially from the more political stuff and news of Wessley that seems unavoidable recently. I would like to see what space a break will open up in my life, and seeing as I will be doing fun/sociable things in real life it seems a good time to try.
Speaking of Wessley, I wrote to The Times newspaper in response to an article they wrote about him and the death threats he has been getting. This is one of several media articles covering this story over the past week and I finally had enough and felt I had to do something in response. I won’t dignify them with a link, suffice to say they are very one-sided and another story about ME that does not address any of the really important issues, instead just focussing on the actions of a very small number of people with ME in order to undermine us and the validity of our voices. The reasons for these threats were not represented and the article itself admitted they were very few in number. I don’t know if my letter will be published, but I hope they do publish some decent responses as I know of other people who have written in.
Oh, I nearly forgot! I must mention the new International Consensus Criteria, published in the Journal of Internal Medicine. It gives a very clear definition of ME, as opposed to CFS. I really hope it will be adopted and used by doctors around the world and in research to move things along more swiftly.
I have just read The Sound of a Wild Snail Eating by Elisabeth Tova Bailey. I really enjoyed it and recommend it to people with ME who sometimes find reading difficult – it is short, simply written and in small chapters. It is really lovely and has nice illustrations too, even in the Kindle version.
I have had a few nice trips to the beach over the last few months. It has been really nice to get out a bit this summer. I saw some great waves!
I will stop here, though I am sure there is much more I could say. Will be back in the Autumn, no doubt. All the best til then to my friends.
Recently a friend of mine started asking around if anyone had tried taking digestive enzymes for their IBS. The one she had come across was specifically for helping to digest gluten. I had no idea that this kind of product was available and started to have a look into it.
I knew that some people took Lactase for dairy intolerance but despite the fact that I don’t tolerate dairy products very well it has never been something I have really missed so I have not tried it (I can eat a bit of cheese, so I am happy). I also have heard of a product that you can get in the US to help digestion of beans, which I assume is also an enzyme product. The promise of help with gluten was a revelation! (The products do not seem to help much with Coeliac Disease, only gluten intolerance, though research is being done to develop enzyme treatments in future as far as I can gather – I have not done a lot of reading on this but just to be clear gluten intolerance is not at all the same as Coeliac Disease).
I found this website which has a lot of useful information on it, which I have not yet read much of, called Enzyme Stuff. I read on there that I should choose a product that has DPP-IV Activity (whatever that is!). The one I am trying has per capsule a 300mg blend of:
Dipeptidyl Peptidase IV (DPP-IV) SEB-Pro GR (trademark symbol) (Protease I, Protease II, Protease III, Protease IV, Protease V), Amylase I, Amylase II, Glucoamylase, Cellulase, HemiSEB (Hemicellulase), Alpha-Galactosidase, Xylanase), Lactase and Lipase.
The capsules are vegetarian which is nice.
It “supports the digestion of protein in gluten-containing cereal grains including wheat as well as casein-containing milk products and other high protein foods”.
As it has so many enzymes I am planning on testing it on a variety of foods that I struggle to digest, not just gluten and dairy products.
For the last 2-3 years I have not eaten or have rarely eaten (and with consequences!): Gluten containing grains, any other grains except rice and quinoa (which is technically a fruit they say), any fruit except peeled pears and avocados, any potato that is not freshly cooked and still hot, beans and pulses, certain tougher or fibrous or cruciferous vegetables, vegetarian protein products except tofu, eggs, dairy products except small amounts of cheese and chocolate (of course), salads… can’t think what else! I am vegetarian so I already do not eat meat and fish, so you can see how limited my diet is. I am lucky that nuts and seeds have been fine.
So far this is what I have done:
Firstly, I took a capsule every meal for nearly three days just to see what effect it would have on me while I continued to eat my usual “safe” diet. I did not want to be confused by any reaction to the tablets themselves, though this was unlikely as I chose these ones in particular as they don’t have any extra ingredients that might cause me trouble (some products actually contain gluten and other problematic things as well as the enzymes, which seems strange, though perhaps demonstrates product confidence!). Result: things were not perfect either before I started to take the enzymes or during those three days, but there was no real change.
On day 3 I had a tortilla wrap (soft white bread) with fillings that I would usually eat with rice and I knew were safe. Result: No major problem, I did have increased wind and activity especially the following evening and it stopped me sleeping as well as usual, especially as my bladder was more sensitive and there was a bit more discomfort than usual but not too painful. No constipation or diarrhea, nor did I feel ill in myself which is a common result for me of eating something strange.
On day 6 I ate an egg! This is a big deal for me as egg yolk has long been as issue for me. As the enzymes mention high protein meals, I thought it was worth a try. Result: again, some reaction but nothing unbearable. Much the same as above.
I waited a bit after that to check for constipation as eggs are bad for that, and also as had visitors I held off trying anything else in case of anti-social bodily behaviour, so –
Day 10 I went to a pub and had a cheese baguette with chips! Chips eaten out are a big problem for me as potato starches become indigestible (and cause trouble to me at least) when they have cooled, so anything like pub chips that are cooked in two stages are not good. The following day (gaining in confidence) I ate a cheese sandwich made from lovely granary bread with mayo and a little bit of red onion and lettuce. That was delicious! Result: That was three days ago and there has been no real issues for the increased risky foods all in one go, or for having them two days in a row!
It is early days and I need to do a lot more experimentation and also decide what changes to bowel habit I can live with and what is too much. There have been changes and I would not like them to be constant, or to be worse (if I ate normally it would potentially be much worse as most people eat gluten and other foods I am very sensitive to, at every meal). However I am really happy with how these first experiments have gone and especially that I do not feel much worse in myself. I am allowing for a period of readjustment to a change in diet as I have not eaten these foods for so long. I am still taking my anti-spasmodic tablets which I think are helping, but I know from trying a few different foods while just taking them that adding the enzymes has really made a difference as I was still having fairly marked reactions before I started to take them. I know it may seem like I am being over-cautious but I really have had very strong reactions to so many foods and have tried again and again to reintroduce foods back into my diet with no luck. This really has been so much better than I expected and I am looking forward to trying lots of different things and seeing where the limits lie. I doubt this will be a complete solution to my problems but I am really hopeful from these initial tests that it could be quite life-changing.
I suspect that I have a leaky gut and that the reason I often feel ill when my IBS flares up is that I am actually being poisoned as waste products “leak” back into my blood stream rather than being broken down as they should be. If enzyme supplements can help break these products down then this would be a big bonus for me. I have not felt this poisoned feeling at all! I might do another blog post on leaky gut issues as it is quite complex and I really should read more about it and see if there is anything else I can do to help myself improve/heal. I wonder if I should take a probiotic as well, I know it is recommended. I have taken them sporadically before. I also know that zinc is recommended and I do take a zinc supplement already.
I will read more about it all, and also perhaps try a different product next time to compare, as I have seen products listed for different issues and I need to research if any would be a better fit for my problems. If I can eat a more varied diet (and digest and get all the goodness out of what I eat) this can only be good for my health and also will allow me to go out to eat sometimes and even stay overnight somewhere without having to take my own food with me! This will mean a great deal to me and open up possibilities for occasional fun and sharing more things with my partner and friends. It will also help my partner if I can eat more convenience food occasionally as all my food has had to be cooked fresh (there are a few things I can eat as leftovers/reheated but not many). Also our menu at home, while tasty, has been very limited and I am sure she will enjoy a bit more variety as often there just is no time to make separate meals for each of us and my needs have dominated what we eat most of the time. Also if I eat less specialist foods our shopping bill might come down a bit. Well, it might help pay for the enzymes anyway.
So tomorrow is fresh pasta day! I can’t wait!
The last few weeks have been eventful.
I saw a Pain Specialist on the NHS a few weeks ago and it was a traumatic experience for me. I was not going to blog about it as it is a bit complicated but I will say that firstly I was very distressed by my level of cognitive function during (and in the days after) the hour-long appointment. I still have a very patchy recollection of what happened and what was said, complicated by my partner’s version of what he said (and what he meant by certain things) being different to mine, so in going over it together to clarify it I was further confused and my memory warped. Secondly, the man himself was quite strange and I found his style of communication and approach not to be one I could work with. I am still unsure what exactly he was offering me, though I have been told by others who have been to similar things and by my CFS specialist that it is CBT-based stuff though he seemed to be dressing it up as something more. I was open to trying that for pain, which is why I went as I suspected that was what was on offer, but unfortunately he kept asking me questions and saying things that covered not just pain but my illness as well and I could not handle the overly psychological emphasis where that was concerned. He said a couple of things that were very dismissive of my physical illness and if he did not come from the “CFS is a false illness belief” school of thought he frankly should have enough nous to know it would be a sore point and make that clearer… he did not. I have been so scarred in the past that I cannot handle that kind of territory, partly as my cognitive problems mean I cannot challenge things that are said at the time or be assertive enough to make sure I am understanding things correctly if I am over-reacting. To get over this history and aversion even if he could help me with pain management would take a lot of work and feel like a fight, and I do not have the strength.
I have also just seen my CFS specialist. It has been over two years since I last saw him as I see the POTS specialist regularly so there is not really a need to see both. I wanted to talk to him about a few things. We talked about my neuropathic pain (something I did not get to ask the pain specialist about properly in the whole hour as he liked to talk and had his own agenda). I asked him why I have it, if it is common with ME/CFS, if it is a sign that I have fibromyalgia and if I can expect it to get worse (if it is degenerative).
His answers were: That is it part of the neurological changes that are responsible for the over-sensitivity to light, noise etc in pwME (he calls it CFS of course) and that this is just over-sensitivity to touch. I am very over-sensitive to touch, certainly, and cannot be touched much in everyday life, or only in certain places and in certain ways. The pain is triggered by touch, whether that be of air, fabric, moisture, heat, cold, my own hair or dead skin, etc etc, but it seems to me that touch-sensitivity and this pain are a bit different but neurologically they are obviously very connected… anyway, next question:
He says, yes, that yes it is common with CFS. I have never spoken to anyone with CFS that has these symptoms as extremely as I have, but maybe they do exist, or perhaps he does not realise how extreme my case is? Some people with Fibromyalgia seem to share these symptoms but again I have not spoken to anyone who has it exactly like I do… granted, he sees/knows more people than I do! (I also asked about my Trigeminal Neuralgia as that is also nerve pain I wondered if it is connected. He said it is not associated with CFS and it just something I happen to have and will continue to have on and off).
As for if it is Fibromyalgia (FM), he says that he sees FM and CFS to be like a piece of string with pain being predominant on one end and fatigue being predominant on the other and that people are somewhere along that spectrum. He said there has been one study which suggested they were distinct entities but he is not convinced. He says that many people with CFS have fibromyalgic pain to some extent. I would suggest the piece of string could be a loop as some people have both fatigue and pain pretty badly!
As for the degenerative nature of the neuropathic pain he says it will be worse when my condition is worse and improve when I am in better phases… no discussion of whether my condition in general could be degenerative, but he seems to think waxing and waning is the general pattern. I have been stuck in this bad phase a while though! Bring on the better phases…
He also said that I would probably not want to up my dose of Gabapentin much more than the level I am at… the Pain Specialist said it could go higher but that whatever I do, eventually my body will get used to any pain medication and the pain will be back how it was before. There’s a cheery thought. The Pain Specialist did talk about medication and said he will recommend some options to try when needed so that may be a useful outcome from that meeting.
I was happy with the CFS specialist appointment and his answers to my questions.
Interestingly the CFS specialist recommended a book by Jon Kabat-Zinn. I have ordered it. It is about mindfulness and coping with illness and pain I think, though I am not sure how specifically targetted to that. After a quick survey of facebook friends I thought it sounded worth looking into as people said he was good. One friend also mentioned Breathworks to me and the courses on Living Well with Pain and Illness look really interesting to me. I do not think I am well enough to attend the courses in person, but would prefer that, though they do do a telephone-based version. I am going to look into it.
I am reassured by my openness to this that I am not closed to the mind-body connection or to looking at my own behaviour in order to get the most out of my life limited by illness and disability. I do not know why I over-react to the CBT stuff which may in fact just be trying to do the same thing using a slightly different approach in the end. I cannot help feel though that with the CBT stuff the people offering it to me seem to want to use it to deny my illness, not to start from a basis of “yes, you are living with a physical, likely permanent and pretty severe illness, but let’s look at how you can live best with it,” but more like “You are focussing too much on your physical symptoms and making them worse, and frankly we think that much of it would disappear if you just did this CBT (and were open enough to it) and you would live a much more normal lfe.” I know that how we respond to our illness and pain, how we think and how we react can affect our experiences but there is a huge limit to the curative effects and this is the issue I have, I think; the basis and assumptions on which this is offered. The breathworks video I watched on the site showing an interview with the founder of the company shows that her attitude is much more about accepting the reality: I have pain, I have disability, I have illness and that is unlikely to change. Then we can move on to work with this reality.
Am I being over-sensitive to the Psychologist’s approach and denying myself something free and useful on the NHS? I just know it causes me so much stress to engage with it, it is probably not worth it anyway… it looks like I will be finding my own way.
One thing that came up in the Breathworks video is remembering a happy/pleasant experience in order to take yourself away from current distress. I tried it this morning when I woke up too early and was in tears in seconds. I have tried this before with similar effects. It seems that the grief is still just below the surface and will not go away despite having now been ill and supposedly processing this fact for twelve years! I think it is harder to grieve when things fluctuate and change and nothing is certain, or we grieve for what is lost, then we become worse and have to start the process all over again. That is how it feels anyway; constantly adjusting to a new reality. Well not constantly, as nothing much has changed lately, but quite often. My partner suggested thinking of something happy from my life now, rather than picturing something from “before”. I very wise suggestion and perhaps I need to choose something that is still possible, at least while it seems I am feeling so much grief.
I need to work on acceptance, though I do have quite a lot by now. I am not sure the grief necessarily leaves us just because we are accepting though? I certainly think acceptance is easier when we understand what is going on and I think I am getting a better understanding of how my neuropathic pain fits into the bigger picture now.
One thing that really made me angry in the Pain Specialist appointment was him asking about what I wanted to do with my life and how I saw the next decade etc. This always annoys me. How can I express in a sentence all that that question summons to the surface? How can I express how I get through each day and try not to make assumptions about the future? How can I endure sitting there and having my levels of acceptance and hope judged by another stranger who clearly has no idea what a loaded question he is asking? How can I genuinely answer a question I have been asked it too many times?
I answered after a long silence with a bit of waffle, a shrug and a “que sera, sera!” I was not functioning well cognitively and just could not come up with anything more lucid, but looking back that is how I feel: what will be, will be. I do not believe that hope will save me, I believe in acceptance. I may have hopes and dreams and they are important but I am not about to share them with him or anyone like him who cannot see the reality of my illness and is already judging me before I step into the room, or at least has not got proper knowledge of my illness on which to base his assessment.
Defensive? Probably. I am trying not to care and not to over-analyse myself, but that is also hard not to waste energy on… is my confidence another casualty?
As I may have mentioned before, I got an Alpha Stim machine a couple of months ago. It has two functions: Pain relief and also another setting called Cranial Electrotherapy Stimulator (CES) which helps the brain go into an alpha state – relaxed yet alert!
The pain relief part is done with electrodes like a TENS machine or with probes (pen-like shape). The current is much more gentle than a TENS machine. The probes work faster than the electrodes but are harder to use on yourself in hard-to-reach places!
The CES setting is done via ear clips on the ear lobes.
I have been using it on both settings just about every day since i bought it. The results have been positive, especially the CES setting. I did not think this part was the part that would benefit me the most, as I have a lot of pain issues and the CES setting is generally used for low mood and anxiety. It also helps with sleep. I have found that I am sleeping better, and that it often just makes me feel better in myself when I am having a low point in the day.
The pain part is more complicated for me. In the information it says that some people have a delayed reaction to the effects of the Alpha Stim on their pain. This applies to people who find that they have a delayed effect with anaesthetics and, lucky me, I do. This means that I may not feel any change immediately, but may feel much better the next day. This does complicate things when trying to measure the effects of the machine, and also it is hard to know how much to do and whether to do it on the days when the previous day’s session has had a good effect, i.e. the pain is not really bad at all (but i know it will return)! For most people though, the effects are felt right away and so they know when to stop, and indeed, start.
I have found that I have immediate benefit from the Alpha Stim with pain in my jaw and face and well as it getting rid of headaches sometimes. I have been having trigeminal neuralgia recently and it has been less effective with this type of head pain. I have been using it the most on my chronic upper back, shoulder and neck pain. I think there has been a definite improvement but I still feel the tension in the muscles, especially in my shoulders, and the pain does come back, especially after using those muscles. I think I need to experiment further with the machine, how much to do and when, etc etc. I am still getting the hang of it.
Other pain that I have is neuropathic pain. The Alpha Stim does not claim to help this type of pain but I was hoping the CES setting might help with generalised pain issues and overall sensitivity to pain over time. No real change so far. I also have very tender skin which feels bruised to the touch on my legs (well all over, really). I think it could help with this type of pain but there are two issues: firstly to do my whole body would take half the day, literally, and secondly the probes use a conducting solution on the ends and that liquid triggers my nerve pain (as does all water/humidity) so I have not been treating my lower body very much.
The company I bought it from are very friendly and helpful and I think I will be ringing them for more advice soon. I also want to talk to my acupuncturist about it, as he introduced me to it, but I have not been able to see him recently. I have an appointment next week though.
So in summary, I would say that I am happy with my Alpha Stim, but it has taken some getting used to for me regarding the pain relief. It also needs the help of someone else to do my back well, which is not always very convenient, or else I have to use the electrodes which can take quite some time. The CES setting has been really beneficial and I enjoy using that part a lot.
You can read about it here (this link is to the FAQ page as it is a quick intro but there is lots of other good stuff to read on other pages, like research studies etc).
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…
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.
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.