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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!

Last week my partner went away for the week to work elsewhere. The week started well and i was pleased that i felt able to look after myself (bearing in mind i had been left with meals already prepared for those first few days). I managed to do some creative things one day and it felt good. My Mum was due to come visit to look after me after a few days so i made sure to pace myself and not do too much. It was hard as i felt pretty good when not doing much. It is hard to hold back when you feel a bit better than usual! In the end i did not feel as good by the time she arrived despite being so careful, which was a disappointment but also perhaps good as she was not feeling well either. We went for my hospital appointment to see the POTS/ME specialist and then rested all weekend until Monday, when my partner was home and we all went out together for the Bank Holiday Monday!

The trip to the hospital was a struggle and i was exhausted from the sustained stimulation of navigation, bright lights, noise, talking, remembering what to say at my appointment, waiting for medications (which we out of stock after half an hour waiting!) etc etc. It seemed like we were out for hours but we were home by half past eleven in the morning. Still, it was quite a trip.

The good thing is that the specialist gave me a new drug to try for my POTS symptoms. It is to slow my heart rate. Also she took my increased pain seriously and in six weeks i need to go back (to assess how this new drug is suiting me) and she will start me on another drug, all being well, which will help with pain and also, hopefully, with my itching. That one is Gabapentin (I think, after i got home i doubted i had remembered right what she said – must get her to write things down next time, as i always have this issue) which I also read can help with deep-stage sleep; that would also be welcome!

On the bank holiday we went out to a local stately home type of property  – there were various art installations (interesting!) and lovely gardens. The sun was out and i took some photos (yet to be developed). I was pushed in a wheelchair all around and it was pretty accessible even if it took two people to push me up the steeper parts! It was a nice day, but i really can’t wait to get my own wheelchair with head-rest: my neck was really painful and did put a damper on things as the visit went on, despite taking painkillers. I was glad we managed to something fun while mum was here, as i had hoped to be able to do more as i have been feeling so much better – i think that “so much better” is put into perspective when i actually try to do things though!

Some good news!

1. I am getting a wheelchair in two or three weeks after being assessed (it was not a gruelling assessment – just a nice woman who had a quick chat and then measured me up!). It is an NHS wheelchair, so it will be on long-term loan to me and they will pay for upkeep/repairs. It will be lightweight and have a headrest and a cushion! I am hoping it will be comfortable.

2. My application for a Blue Badge (disabled parking permit) has also been successful! I think this will be really useful and take the stress out of parking in many situations. It may open up some new options for places to go.

3. The itching has improved. It is still coming and going but is much better and almost as significant is that the night-time (drowsy) anti-histamines i am on seem to be really helping my sleep. The combined effect is that i seem to be sleeping better and my baseline for activity has been raised a little and i feel less manky in general. I have had some really bad days, but in each case it has been one day of payback which i can directly attribute to having done something; rather than just a bad day for no apparent reason. I am liking this new phase very much!

I have left the house a bit more than usual (at least once per week if only for a gentle/brief thing) whereas before i was not going out other than for essential appointments for weeks on end. A big change for me. Things seem a bit more possible and i feel i am recovering faster from doing things. I am still needing to have a sleep in the day, but i am finding it harder to get to sleep until a bit later in the day and am sleeping a little less. Before, I would often get up, have breakfast and check my emails etc. then have no choice but to just crawl back to bed. I feel more alive now. It is not a giant leap, but it is such a welcome break from the drudge of the past year really, which has seemed so retrograde overall, maybe this is the start of a better phase… Early days, it has only been two or three weeks! I know i am getting ahead of myself and am probably overstating the change, but it feels dramatic to me. Fingers crossed this “side effect” of the anti-histamines does not wear off… my mood was really struggling before – the itch was really driving me into depression as it was hard to cope with. I am feeling so relaxed now in comparison and my other pains are better too!

The best things have been going to a local art gallery and seeing the Hokusai print “Wave off Kanagawa” with a friend, and then, a week later, going to Cherryburn with my partner, where Thomas Bewick the local woodcut print-making legend was born. The afternoon at Cherryburn in particular I felt really good and my stamina was good. It was the best I have felt for many, many months. The sun was shining down on us and I felt so lucky to have made it out and to be enjoying a day trip with my partner. It was fun. We even stopped off in a pub for a cuppa on the way home (yes, that is two separate locations in one trip out!).

3. I have some lovely visitors coming to see me over the next few months, some end of May, some Mid-June and then another in August and we are going on holiday with her to a cottage up the coast from here – I am counting the days til my summer holiday! I did not think I would be able to go anywhere this year as I have been finding travel impossible, and also the itching has really limited my ability to sleep anywhere but my own bed (if i am lucky) and i cannot go anywhere without a bath, as showers are also a big no-no. I am still a little concerned about it as my skin is so sensitive to “lumpy” mattresses (and a million other things), and painful even if not always so itchy, but things are much better than they have been and now i think i will survive. We will be close to home anyway if things go wrong, but far away enough to feel like it’s a holiday!

4. I continue to be able to read and have just read The Colour Purple, by Alice Walker. It has sat on my shelves for over a decade and i am so glad i decided to read it at last! So well written, interesting, moving and grounding. I loved it. I have also bought two books in a second-hand shop (it was so great to be able to go in and browse them last week on a quick trip out!). Lolita, by Vladimir Nabokov who several people tell me is worth reading but i have not read anything by him before, and The Lovely Bones by Alice Sebold. I don’t know which to start with!

5. Just remembered another good thing! I am doing more drawing. I have been inspired by Michael Nobbs and his “75 ways to draw more”. The results are a bit mixed but at least i am doing something rather than waiting til i feel good enough to do something i think i actually “good”. A few minutes here of there can produce something, and something is better than nothing! I am being brave and posting them onto Flickr, as there is a “75 ways…” group there. I have had some nice comments from people who are evidently much better at drawing than me, which is generous of them!

So in summary, life doesn’t feel so bad at the moment, long may it last.

I have (at last) been to see the dermatologist. I have a diagnosis of Physical Urticaria (PU). I have blogged about my itching before (first time nearly a year ago, as well as here, here and here) and thought i had Aquagenic Pruritus. I asked her about that and she was a bit dismissive and seemed to think it was pretty much the same thing, or was covered by PU. Well, at least i have a diagnosis of some kind and not just one i had to work out for myself due to GPs being dismissive for many years. Maybe i should have been more assertive, but after you tell a doctor about something and they tell you there is nothing to be done, it is easy to not try again, especially when you have plenty of other health issues vying for attention and you already feel like you annoy them just by talking about more than one thing at a time.

Anyway, things got so bad i had to get help and my POTS specialist was the one to refer me in the end. It took 4 months to be seen, and they have been a tough four months. When you wait so long for an appointment about something so painful and distressing you cannot help but build it up into a day of massive expectation, hope, fear, etc. I knew it would be a let down and that rarely do doctors engage in a way that reflects the severity of the problem, nor the traumas suffered in order to get to the point of seeing them. But it was ok.

I have been given some anti-histamines to try. Some non-drowsy for the day and some drowsy ones for the night. She did not engage with my existing conditions, even when i assured her i was used to navigating the mornings from a drowsy point of view already (no i won’t operate heavy machinery – like i could!). The fact that no-one (medical) has ever thought to suggest anti-histamines before shows how little attention this problem has been given in the past. In reflection this annoys me and maybe i should be making more of a fuss about other long-standing problems! I tend to just focus on the most pressing issue at any one time, but still i seem to be forever attending appointments. It is a hard balance and i don’t want to be labelled as a time-waster, nor do i want to be jangling full of more medications than i need to. I have taken antihistamines before but only as sleeping tablets and probably too sporadically to notice any difference, so hopefully I have been wrong in thinking they won’t work… the dose I have been given is certainly higher so we shall see.

There was no discussion of why I was getting this so badly, or why it may be worse now. I asked if it could be connected to my existing conditions, she said “maybe”, in an “I don’t know or care” kind of way. I notice that in my previous posts I have talked about increased pain of other types at the same time as bad phases (bladder discomfort, muscular pain, skin tenderness and feeling bruised/tender in many points). This still holds true for me and i cannot believe there is no connection. The POTS specialist wondered if the Midodrine was making it worse. No answer on that from the dermatologist who could not even find it in her book of medications to check if safe for me to take antihistamines with it. We assumed it would be fine.

She seemed surprised the Capsaicin cream has been helping me but it’s not something she recommends to people, so i have to stop that. I am a bit wary as it is the only thing that has got me through the last month or so. I still itched with it, but it was much less frequent and intense. I hate it actually, it’s burning nastiness, but it was all that worked and better to have a nasty burning pain sensation when awake already, at a time of my choosing, than an itch attack when trying to sleep!

So, i have to go back in 6 weeks to see how things are. I really hope i can tell her that it is working. I hope i can be sleeping on any bedsheet from the cupboard not just the one that is the oldest and smoothest that doesn’t wrinkle under me so much, that i can shower (yeah right – i can’t believe that could happen after all these years!), that i can pull on socks in a carefree manner, let my leg hair grow, or shave it off and have no consequences either way, that i can have a cool bath/shower,  have a bath without adding bicarbonate of soda, that i can allow drafts to run up my PJ legs, not have to rub in capsaicin cream three times a day, lie on a lumpy mattress without sweeping all the grit out of the bed before getting in and have no pillow between my legs, not have to jump into my PJs and dash to the toilet in the night to try to avoid too much temperature change to my legs, that i can get out of the bath and dressed and “go” rather than lie in bed for ages afterwards waiting for the itching to pass, that i can allow dead skin to build up and not bother moisturising, that i can scrub at it gently to exfoliate it without fear, scratch randomly without major over-reaction from my skin, use any soap or bubble bath I want, never see any emollient clogging the plug hole again, wear fabrics other than the smoothest ones, wear knickers with bulky seams and lie on my side in them, go and stay somewhere other than home without fear of all the above factors making it a trauma, and live without wasting energy on all these things and the exhaustion caused by stressful pain and disturbed rest/sleep. I wish. I hope. I really don’t believe it can be this simple, but i hope these tablets work.

*I have been writing this post for at least a couple of months, so it is a while now since the really bad itching attacks. It has been quite reasonable and well-behaved over the festive period, i am happy to report! But anyway, here follows an update on a very uncomfortable symptom flare up i have had these last few months… it really has felt like the last straw at times on top of every other symptom i have had during this difficult time…*

I have talked about my itchy skin problem before, see this post (mostly the second half). I did not mention Aquagenic Pruritus then because i had half forgotten about it, and half was not sure it was worth mentioning as a diagnosis in itself, though i explain the basic issues that constitute it. I found some information about it a long time ago and thought that it sounded like what i had, but when i went to the doctors they just said they had not heard of it, gave me some emollient to try using instead of soap in the bath, and that was that.

The last few months the itching has been bad. Very bad. It has been getting gradually worse. Usually it is just a bit itchy after a bath, but if i stick to my routines and rituals and shave my legs every other day it stays more or less under control. More recently it has been flaring up so that i have itching whenever i am in bed, and if i don’t shave every single day (even if i do). It has spread from my lower legs to my thighs and upper arms (where i don’t shave – it is not caused by that) and can be triggered by pressure of lying on the skin. Some clothing (for example putting on socks, jeans) can trigger an attack which can leave me sitting/lying waiting for the episode to end for some time. I would just note here as well that it is widespread pain, and feels under the skin, not your normal little itch that needs a scratch. It is a strange sensation but i am not sure that “itch” really covers how distressing it is!

It was all getting very stressful. This extra bathing/shaving/having attacks in bed several times per day was really dominating my life. There was only one sheet i could lie on in bed that was smooth enough not to create itching and pain, and the others are not exactly rough, just normal cotton sheets! It is often worse in autumn but never this bad, and never with so much itching that seemed unrelated to water. I mentioned it to my POTS specialist last visit and she said it was probably just another symptom of my Autonomic Nervous System not working properly, but she did not suggest anything i could do about it. She said it may be a side effect of my medication, but seeing as it is not new to me (and i have been on the medication, granted at lower doses for over a year with no obvious connection) i was doubtful. I was looking on the internet and rediscovered this Yahoo Group which has a messageboard with others who suffer from this painful itching too: On it i found some information about research that has been done (not a lot as it is a very rare condition) and found that one found that putting Bicarbonate of Soda into the bath helped some people. I tried it and YES! it has helped me!

It is not the whole answer. I am maybe back to where i was before this very bad period of the past few months. I still need to shave almost every day or it can be worse, and i am still lying on only the smoothest sheets but the attacks are milder and less stressful and long-lasting. I found when i had flu this last week it was worse, i think due to sweat (well it is water, even if i made it myself!) on my legs, maybe that washed away the bicarb effect or just triggered an itch response. Bicarb is alkaline so it may be that which helps, i do not know. I could not read the actual research paper, only the abstract, so any theories as to why it works and suggested amounts to use have passed me by. I use about half a tub in each bath (100g). Of course i cannot shower still, which limits my ability to go anywhere without access to a bath. It is also time-consuming to bath all the time, then lie down for a while and it’s all very energy-consuming as someone with ME. Pain and physical discomfort are very energy-sapping.

I did go to the doctors armed with printed off information about Aquagenic pruritus and hoped to get a dermatology referral, but i only saw a locum and he said i should wait to see a GP from the practice. He did give me a prescription for Capsaicin cream (which i asked to try, based on other research i read). I used it but i am not sure if i used too much or if more experimentation is required (i am not keen!). It seemed ok to begin with. I did a patch test and all seemed well for several hours so i put it all over my lower legs. That night my legs were hot and i had to keep putting them outside the covers to cool off. Even later the next day, when i thought the effect would have worn off i had a bath and it was so painful, like burning! Like bathing with sunburn! The cream’s active ingredient comes from chillies by the way! apparently with regular use the burning gets less, but i am not sure i will get that far. It was a change from itching but almost as unpleasant!

I would still like to discuss my options with a dermatologist. I doubt they know much about it as it is so rare, but they may be able to suggest something. My main problem is that my leg hair seems to be a trigger and I have looked into laser hair removal but it is very expensive. I am wondering how hard it would be to get it done on the NHS! I think it would be hard to justify as a health need, despite the very long time i have had these problems… I do not know how much benefit it would give me until i tried it really. Also the health warnings on the “do it yourself at home” laser machines are frighteningly long and i am not sure i want to risk damaging my skin or making the irritation worse. They also mention vascular problems which i may qualify as having. I need professional advice on it but i do not know if there is anyone who can understand my special circumstances…

I have been to the doctors since, but have not mentioned it as there have been other more pressing issues to discuss and time is always short. I need to make an appointment specifically to talk about this issue, but I am not sure when i will get to it. Probably next time it gets really bad i will move it up the priority list!

I went to the hospital today to see the POTS specialist again. I had a good time! I was a bit worried about how i would feel, and considered ringing them in advance asking them to wheel me from the entrance to the ward, as i had to go alone and it was an early appointment again, but decided i would be ok. They have moved and last time when we went to the new location for the first time i felt very disorientated. This time i had to use a different entrance and it was actually better, though a bit of a walk. I have improved a bit the last couple of days so felt ok to walk a bit.

I was impressed with the hospital entrance which had a shop, cafe, starbucks, hairdresser etc and was really pleasant. I thought i would have an easier life if i lived there as everything was so close together and convenient! I went into the shop on the way out just because i could (i miss shops, not that it had anything i wanted really).

Anyway, so the apppointment: I saw her early as the person before me did not turn up (a “DNA” – i had not heard the term for ages and it took me a few seconds to realise she meant they had not rung to cancel: “Did Not Attend”. I like the term – good for medical appointments!), so she had extra time to spend with me which was good as i had a few things i wanted to talk about.

I told her that apart from the first few weeks this three month period since i saw her last have been pretty hard, probably due to the virus i had which i have not really got over… at least i have not regained the levels of energy or strength i had before that. She asked about my typical day again to identify any peaks and troughs in function to adjust my dosage to help me through the low points. She suggested taking a higher dose first thing, staying the same at lunchtime and re-introducing the late afternoon dose which i am pleased about as i seem to have a big slump late afternoon. So that was the POTS stuff done really, she commiserated me on the virus situation as the same thing happened in the period before i last saw her. Hopefully i can avoid catching any more and maybe experience more of the glimpses of feeling stronger that i have had between these long running lows. There HAVE been times where i have managed to do more, feel better in myself and bounce back quicker, but is it hard to remember them after so many weeks that feel like regression almost to the old days before i even got POTS treatment.

I also wanted to talk to her about my pain and discomfort issues. The last few weeks my muscular pain and tension have been particularly bad. I have had to lie flat on my back a lot more (which i forgot to say) just to rest my upper back as i am having trouble sitting comfortably, even in my one comfy and supportive chair in the house. My skin has been very tender and painful to touch, particularly in areas where my muscles are rock hard underneath. I have been having regular massages which have helped a little bit, but only in a very temporary way. I have also made a bit effort to stretch the worst areas every day, which feels good immediately afterwards and i am sure had helped, but again not dramatically. 

I have also had an increase in skin itching and sensitivity, which may or may not be related to the increase in other pain, as well as more pain/discomfort from my already sensitive bladder, meaning that i feel a continuous feeling of needing a wee, especially in bed when lying on my side or when there is any clothing pressing on my stomach. The itching is also worst in bed and we now only have one sheet i can sleep on that does not cause itching, despite the others feeling quite smooth to the casual touch. She thinks the itching is probably just another symptom of my automonic nervous system not working right. She has previously given me a blood test to investigate the itching so there was nothing else to do really.

She gave me a CK blood test to see if there is anything going on with my muscles. While i do not want this to come back positive (after a quick internet search!), I am so impressed that she takes everything seriously and does not just dismiss it as a typical ME symptom and adopt the “what do i want her to do about it” attitude of most other doctors i have known. I am reassured that if there is something she can check out she will. As usual the taking of the blood was painful, as when a needle is inserted into my veins typically nothing comes out, and today was no different. I warned the nurse before we started and she said today we might be lucky, i said i doubted it. It is like my blood is just sitting there and not going around my body with any force at all, which explains a lot. So it needed to be wiggled and a very sharp pain shot up and down my arm and persisted long after the blood was taken. Ouch! I am used to that though and am not really bothered, though it did make me a bit flushed in the cheeks and lightheaded. She also tested my urine to see if i have any infection but that was negative.

She said there is colleague who does work on muscles that i could see but i can’t remember if that was if the test comes back positive or negative – i am not sure what he can do for me – we moved on quickly to talk about other research she is doing on muscle function and ME and she asked me if i would take part (yes). It involves a muscle biopsy but she says it is pretty much like having blood taken, and seeing as that is usually painful for me i think i will cope with it. Not sure when that will happen. She seemed surprised i am so keen to take part. I am just enthusiastic to do anything i can to help with much needed research and it is good to feel i am doing something worthwhile with what limited energies i have. It is something i CAN do. Plus i like going there, it may seem sad but it often feels like a social occasion. I have known them for over a year and seen them as often as any real life friends this year! They are friendly and take time to chat. It is nice to have some social contact and be out and about.

I have made an appointment with an osteopath for Tuesday as i really need to try something new with my upper back problems in particular, although they don’t just treat backs. I am hoping to also get advice about stretching my problem areas, even strengthening them perhaps, or am i getting carried away here? Also i wonder if my pillow is the right one for me (i am constantly fighting with it to get it fluffed up to the right depth) and if he can advise me on sleeping arrangements, seeing as i spend so much time in bed. It may be making my shoulders more painful if lying on my side is putting too much pressure on them, and it has been too painful to lie on my side much lately, but i do prefer it so maybe a higher pillow (tempur?) would be helpful, but i don’t want to spend a fortune on a fancy pillow then it be no help.

My partner is away for the next few days (though she seems to be coming down with something this evening so we will see what the morning brings – virus alert!). It is the last planned trip she has this year except one overnight trip which should be ok. I am really pleased about that as i don’t think these periods of self-care have been kind to me when i am already struggling. The compound effect of several days alone can really have a big impact on me and take some getting over. Apart from the Osteopath appointment i have nothing much happening while she is away, and i am feeling ok about it now that my pain levels are gradually improving. Maybe in a few weeks i can actually have some spare energy to do some of the creative things i have on my list, as recently i have been just doing the bare minimum in daily tasks and i am getting a bit frustrated. Where is the fun? Where is the creative sparkle that makes life worth living? I have been limited even in computer time, tv time and reading abilities… this blog post may be a sign things are improving! Woman can not live on stretching and resting alone.

On Thursday i had a full body massage and (possibly) learnt more about my body than i expected! Certainly i am asking more questions!

It was much needed as I had had a bad headache for 3-4 days and even when that improved i was left with so much tension in my head, neck and shoulders that it was still painful to touch many areas. I often/always have these tender points, in my upper back, shoulders, jaw, scalp etc. They are little knots of pain and i am unsure what i can do to ease them. Anything which helps seems very temporary and they always return to their previous level of tenderness within a short time. These symptoms were at their worst before i started to take Midodrine, which did seem to ease the almost nightly headaches (as more blood was flowing to my upper torso and head – which is kind of useful to have!), but every now and again they do resurface and there is always that underlying muscle pain and tension. I am wondering if the higher dose of Midodrine i am on is causing this clenching up of my muscles, (i did have worse upper back pain the last time i tried to up the dose) but of course it could be a myriad of other causes…

So that was my motivation for going, as well as the fact that i have a busy weekend away coming up (my sister’s wedding!) the prospect of which is causing me some anxiety, as travel and social situations always do, due to how difficult they can be to take part in and the impact they can have on my health for weeks afterwards – there have been moments where i have doubted i am well enough to go at all, but i am feeling more positive now, and looking forward to actually attending a family event for once!

I have not been for a massage for a long time and it was so good. As always when i go, i realise how much it was needed, discover areas of pain and tension i was not immediately aware of, and think how much it would help me to have a massage much more regularly. I do not know if that would create any long term improvement, or prevent my muscles getting into such a state or if the relief is just temporary… I think it would take a lot of massages and more than i can afford anyway!

When the massage started she did my face and front of shoulders and upper arms, and immediately on touching my upper arms, said there were a row of knots down the front (it was very sore there with even a light touch, which i have been aware of for months). She asked me if i do weight training! Apparently they are “Weight-Lifters Knots”!! I did laugh at that. I explained to her that i struggle to lift even small things, like the kettle, and that my muscles do not behave like normal muscles, as they quickly lose power and energy and over-react with pain and tension for a long time if “over worked”…. She was very surprised and said that she would have thought i was a weight lifter if i had not told her… She asked again to clarify: “so you couldn’t go to the gym and lift a few weights?” “Er, no, really, most days i cannot get as far as the corner shop, i rarely leave the house… i could not get to the gym, never mind do anything when i got there” or words to that effect… As keen as i am to educate people about ME and spread awareness it is quite a pain to have to use time when i am supposed to be relaxing (and I am paying) to explain this stuff but i answered a few more questions (no, i don’t just fall asleep all the time, i am not just tired, i am ill… etc etc blah blah blah).

Anyway, it is reassuring that my muscles appear normal in size etc after 3 years of pretty severe ME and ten years in total of being unable to do any kind of “exercise” as the term is generally understood, though i was more active for several years than i am able to be now. It is something which has baffled doctors and led to people being disbelieved and denied benefits (still are, if you read the guidelines for decisionmakers for DLA on ME/CFS which suggest there should be muscle wasting in evidence to qualify as severe… will find link if anyone interested, but can’t be bothered now!)  as doctors would expect more muscle wasting considering the lifestyle we claim to lead. There have been different theories about why it only happens in people who are very severely affected but it is not fully understood how our muscles maintain their tone.

It seems that my muscles are reacting as if they are overworked. In a way they are (yes i am a closet weight-lifter!): As i say, they struggle with everyday tasks like lifting a kettle, moving a chair, lifting a watering can. What is even harder and has a more long term effect is anything repetitive, like rubbing to clean the bath before i get in, chopping something, rubbing my scalp when washing my hair, and i generally avoid this kind of activity when i can as it leads to muscle pain, long term aches and cramping, as well as adding to a feeling of general weakness and exhaustion afterwards. Some days are better than others, depending on my general state and if i am already in recovery from something or struggling in general.

So far, so much i already knew. What i found intriguing was that, as well as my upper arms, my lower legs at the sides (from ankle bone up, on outsides of legs) were also incredibly sore to the touch and knotty under the skin. I have been having really sensitive skin in these areas (upper arms and legs) as well as itching. My legs in that area are so sensitive that if something touches them unexpectedly (like in bed) it is like a bolt of electricity running through my whole body. I have a real problem of certain areas of skin being so easily irritated and therefore often itchy that it affects my sleep as well as what clothes i can wear. I have to “sweep” out the bed before i get in to get rid of any tiny bits of dirt or dead skin or whatever that has been carried in from the floor, as any of this stuff (which i call “Gravel” as it is so sharp to me, though tiny) can cause a major episode of itching.  I find if there is dead skin on those areas it triggers itching and if i moisturise after a bath and the dead skin rubs off (gross i know, but it does) the itching stops, despite me having rubbed it, which is usually something i avoid as it can trigger the itching. I was starting to think that my nerves were over sensitive and that i had a problem with my skin and pain, though i had no idea what to do about it. This may be partly true but the massage therapist seemed to think that the knots and tension in those areas may be partly causing this extreme discomfort i am having in the skin of these areas. I suppose it makes sense as that underlying tension must affect the skin and could make it more tender and sensitive in the whole area surrounding the problem.

I have heard varoius people asking about skin itching and if it is a symptom of ME. There was a letter in a recent ME Association magazine, and one on a message board i saw recently too. They caught my eye as i have had these problems for a long time. The consensus seems to be that, no, itchiness is not a symptom, but it seems to me in bodies that are riddled with problems that there can be knock-on implications causing almost anything!! (what a cheery thought). My sister has ME and also has problems with itching and sensitive skin.

I have another problem of itching which may or may not be related where if i have a shower my lower legs in particular always react very severely and start to itch. It can last for several hours and all i can do is sit in bed and stroke the skin gently which seems to confuse the nerve signals a little. It can be so painful that i am in tears and is obviously exhausting and distressing. It is like nerve pain, i think the word itching does not do it justice! I never shower now, and the rare occasion that i have (when no bath available) it still happens.

It also sometimes happens after a bath, particularly if the water is not hot enough. I think there is something to do with temperature, as it seems to happen when i get out of the bath and the cold air hits my legs. It first happened when i was 13 years old, so i wonder if there is a hormonal influence. The stimulation of the shower may trigger the itching sometimes, or it could be a problem of being upright, as in the shower and when i get out of the bath. These days i have a very strict ritual around my bath, the temperature, shaving (stubble and hair seem to aggravate the problem so i have to shave every 2-3 days, which is a big comittment when ill), standing for as little time as possible and exposing my legs to as little cool air as possible on energing from the bath. I get straight into bed and moisturise with my tried and tested “safe” moisturiser, then lie there allowing any itching to subside and i cool down slowly and in a controlled manner. I have also noticed it can be worse in Autumn and wonder again if the dead skin as my (usually meagre) tan fades is irritating my skin… so many questions.

Of course i have told a few doctors about this over the years and they have no idea! There is no rash and that is where the discussion ends…

Anyway, i had another massage today (trying for a compound effect) which was great again. I asked her what her advice would be to weight lifters who have “weight-lifter’s knots” and she said that stretching can really help. I already do stretch tense areas, but kind of randomly. When my POTS was at it’s worst i couldn’t even stretch up in a chair without serious dizziness but that is better now… Maybe i should make more effort to do it several times a day and see if it helps… so many things to fit into my day though!

ME/CFS Awareness

ME/CFS Awareness


March 2020