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As i discussed in a previous post ( (and in the comments of that post) i am looking into wheelchairs. Today i went to a local charity for advice on what is available, what things to take into consideration, where to go to get the right one and such like.

The appointment was at midday and it felt early – i felt quite groggy and not properly awake, i was aching all over and felt quite weak. The appointment went fine and it was not too long. I had expected to try out different ones to see what suited me but in the end it was just a discussion. This was perhaps good as i am not sure i had the energy to be getting in and out of different ones. The woman was nice, but her voice was loud (to my ears) which did not help me hear what she was saying. I did manage to follow and i think i asked the things i wanted to, although she did not always answer too clearly. She did say in the end that they did not have any wheelchairs for me to try that would suit me, as we decided i need one with specific high back support, or even head support and good lumbar positioning. It was quite interesting that early on in the discussion she assumed i would just need a standard chair, without asking me at all about my issues or medical condition. It was not a major thing and she was helpful and open to listening and changing her mind, but i was surprised that even at a disabled people’s charity i was judged early on how well i look (though anyone who knew me would see i was seriously struggling! My partner could tell, i am glad she was with me). I would have thought they would have certain questions to ask before making such judgements. She did not ask about my medical condition(s), which is fine as it is not necessarily relevant, but to not ask directly about what issues/needs i have from a wheelchair was a bit strange, i thought. Anyway it was useful i think. I asked about reapplying for a Blue Badge (this is for disabled parking for those not in the UK) and also about the NHS wheelchair service and what to expect from them. I will try again for the Blue Badge at some point, despite being turned down before.

I briefly asked about scooters and powered chairs were mentioned but they did not seem viable options. I think i will see how the manual wheelchair suits me and how i find it affects my ability/experience of going out and that will give me more clues as to whether those other options could be useful in future. I think it is a big investment to get a mobility scooter for the number of times i am likely to use it. I cannot magically be able to leave the house much more often than i do now, chair or no chair; there are just so many other reasons i cannot leave the house, other than straightforward mobility issues. Unfortunately.

When i got home i took a while to wind down (despite not being awake in the first place!) as it took a lot of effort to get through the meeting. I went to bed after a while and had some strange sensations that have happened before.

The first has been happening quite often over the last few months, but i don’t remember it happening before that. It only happens when i go to bed in the day, not at night. I get these feelings of icicles running up and down my spine. It starts from the back of my head and runs all the way down my spine and into my legs in a wave of shivers and i feel really cold inside. Today i could tell it was going to happen and i took a hot water bottle and two hot wheat bags to bed with me and i still could not get warm for a long time. After about 3 hours i woke up (i had been asleep maybe an hour) and was so extremely hot i had to fling all the covers off! This is what happens: freezing, then unbearably hot. Very strange. Often i feel quite a normal temperature until i get into bed and it just starts up right away – today i already felt cold so i knew what was in store.

The second is a neurological-type thing. It used to happen a lot when i had a specific song as my alarm tone on my phone and i would hear it when it was not going off. Not like when a song is stuck in your head, but actually as if i was hearing it for real. It has not happened for a while but today it happened with my partner’s alarm. It went off and she turned it off, but i could still hear it. I took my ear plugs out to check if it was really there, and although i could tell it was not going off for real, i could hear it really softly still “playing” in my brain. Very odd. I am not worried as long as i don’t start hearing other imaginary things! I think it is something that happens when i am struggling/have overdone myself. If it continues she will have to get a better alarm ringtone, is all i can say!

*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!

So, i went to see the POTS specialist this morning for my 3 month review and this involved setting my alarm for seven am… i have to take my midodrine then wait half an hour before rising so i lay there until half past trying to convince my body to rouse itself… it was hard. I had a little breakfast then my partner drove us to town. As it happened the rush hour was lighter than usual and we got there quite quickly, but happily i was seen a bit early too.

I was told last time that she may give me another drug to try on top of Midodrine when i go this time, but had not told me what it may be. I had a bit of a nightmare thought a few days ago that it may be SSRI anti-depressants as i have read they can help with POTS, and also i know that beta-blockers are used too (they have side effects which don’t seem good for a pwME). I started remembering all the side effects and experiences of being on anti-depressants and started to worry about what to do if this was her next plan for me. One the one hand, if it would help the POTS is it worth trying again, despite my negative experiences and associations? I was not sure.

But thankfully all she suggested was upping my current dose again and taking more of it earlier and not bothering with any at tea time. I am happy with this as although i have not felt great the last three months and the first two months after upping the dose last time i really didn’t think it had made a lot of difference, the last few weeks i have felt stronger in myself and think at last it could be midodrine having a positive effect. Month two was plagued by wedding recovery and virus, so that could have delayed any awareness of it working being apparent.

I did ask her what the other drugs may be that we may try in the future. She reassured me it would not be an SSRI, but a new drug to slow the heart, or Florinef, which i have heard of. So i am happy to hear that.

The meeting was over pretty quickly and i came away feeling like i had not said something. I often feel like this though, especially when i have been building up to a meeting for ages then it is over so quick and i don’t trust my brain so much these days to remember everything either.

I did not mention the urine test i took, but more importantly i did not mention the muscular pains and tensions, headaches and skin tenderness that continue to plague me. They are more ME related than POTS related but who should i talk to about them (if anyone)? I am no longer seeing the ME specialist as he said i didn’t need to see them both and the POTS specialist deals with ME patients/diagnosis etc. but when i see her she doesn’t ask about those things. My GP would probably not have the specialist knowledge about ME and I have never got much useful out of them about specific symptoms before. I no longer see a particular GP, i just take lucky dip when i go as i have given up on the one i used to choose and have not settled on a new “favourite” yet. I only really go for sick notes anyway as my employer still wants them(!). I think i will see if these symptoms improve over the next three months and if not i will make a mental (and paper!) note to mention them next time i go. Life would be much more pleasant and productive if these symptoms were not so often present… I think the POTS specialist thinks that all my symptoms will improve as the POTS is treated and improves – this has largely been the case, but has affected a few dramatically and some not so much.

We shall see, as always…

As i have mentioned before (see CBT (2) and CBTupdate) i get an HPI payment through my employer’s insurance scheme, and they forcefully “encouraged” me to go to CBT.

Recently i went to see my NHS specialist and the insurance company wrote to him for a copy of his report (they like to see everything related to my health). He has written them a great letter and i thought i would share my joy by copying the important parts below:

Her condition has deteriorated significantly…her physical activity is reduced to 5-10 minutes without needing to rest… She is dependant for her ADLs (Activities of Daily Living) on assistance from her partner. Her memory and concentration is poor. She needs to sleep during the day.

She is not fit for work of any kind at present and is unlikely to be fit for work in the next six months, as a minimum.

Since she last had involvement with our team her condition has deteriorated. This is in part because you company required her to attend CBT with a therapist who has no knowledge of the management of CFS/ME – this has contributed substantially to her decline and was an entirely inappropriate intervention which should have been discussed with me first, as her treating clinician.

Her depression is secondary to her underlying physical condition. There are no secondary psychological conditions preventing her recovery.

I would note that from the tone of your letter and from the approach you have taken to my patient that you view her illness as entirely a psychological one. This is entirely unacceptable and demonstrates an inadequate knowledge of the current theories of the aetiology of chronic fatigue syndrome. CFS(ME) is classified as a neurological disease under ICD-10 and as a physical disabling condition in the NICE guidelines of 2007. Current research has shown that there is a genetic susceptibility to develop the illness, which in about 50% of cases can be triggered by infection, as in (my) case. We believe that infection leads to a dysregulation of the immune system, probably involving the IL-6 – IL6R system, which in turn leads to generalised autonomic dysfunction, the degree of which can be correlated directly to the level of fatigue. The muscle pain in CFS(ME) has been shown to be due to lactic acid accumulation in the muscles secondary to abnormal muscle blood flow. Functional brain imaging and neuroendocrine testing has shown that depression and CFS(ME) are completely distinct. I trust that henceforth you will treat her condition from the appropriate medical perspective.

It is so good to have this statement of support from the specialist. Hopefully it will keep the insurance company off my back for some time, although since i told them how i was not well enough to go to CBT any more they have not contacted me much at all, just sending the annual review documents/forms to fill in. After ringing me every two weeks over a long period before i went to CBT to check how i “felt” about it, and me forcing myself to go twice, despite how totally draining it was to answer an hour of personal questions, and not wanting to go at all, there seem to have been no repercussions to me stopping it. If only i had known that before! I think the insurance company are very fickle…

On a more general note it is so reassuring to read his statement about CFS/ME. Despite having seen him several times before and attending regular group sessions with his team, i was never completely sure of how he felt about the illness and it’s causes etc, which affected my experience in those groups. The support they offer is obviously very limited by the NICE guidelines, and i found it of limited use (despite this, the specialist advises me to go again – deep joy), but it is good to know what he thinks. He genuinely seems to care about pwME and our cause and wants to help us. It must be very difficult for him not to be able to do more.

ME/CFS Awareness

ME/CFS Awareness


July 2020