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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.

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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…

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

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