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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.

Please note, this post contains some moaning but it does end on a fairly positive note!!

It seems that i started to take the progesterone pill almost 2 years ago (it will be two years at the end of June, see post from the time). I have just had my blood lipids checked for the second time, and while i was there i found out more about the results from the test i had last June. I was told at the time that my cholesterol was “a bit high” but at 5.2 or 5.4 (i have forgotten exactly) it did not seem too bad. Today i found out the actual problem is that my HDL cholesterol is actually too low (0.8 where it should be over 1.1 for a woman). I apologise for not knowing what these measurements mean or are measurements of, that was not discussed with me. Only i was told it is the difference between the two amounts which is bad, rather than just a case of one being dramatically too high as i was initially told. The HDL kind that i am low in is the one that protects from heart disease, so it does not sound too good. I will have an appointment with the doctor soon as the new test results have come to discuss if things have changed and what it all means.

The reason i am being tested is that being on the type of pill i am on (it is not the same as the progesterone mini-pill, it is slightly different, and works to stop my periods completely) can affect my lipids profile. Progestins do that apparently. I am not sure if they ever tested my lipids before i was on the pill to make it clearer whether this imbalance is directly due to the pill, or actually due to my illness in general. Apparently low HDL can be associated with certain conditions. I wonder if ME is one of them, especially seeing as i have read (somewhere) that heart-related deaths are higher amongst us, not that i want to scaremonger without evidence! Anyway i will get my results in a few days and see if anything had changed/improved this year. If not i may have to stop taking the pill – not an attractive prospect with everything else i am dealing with at the moment.

I am having various (ongoing) issues in my pelvic region, mainly pain-related and bladder related (possible interstitial cystitis – i am reading up on it – it often accompanies Fibromyalgia, IBS etc) and i wonder if the progesterone pill helps or hinders that. Also i have bad itching which continues to plague me (not long until my dermatology appointment, thankfully) and i wonder if hormones could play a part in that. Both are unlikely but i am getting very confused about what could be affecting what at the moment. I also am having a lot more (constant and worse in intensity) back pain and muscular tension which is also an ongoing problem and with my skin, muscles, pelvic area and all sorts all causing at times serious discomfort i am wondering if i have developed Fibromyalgia-type symptoms… I certainly have tender points on my skin (jump when lightly touched) but are they in the right places?! It all seems possibly connected: the itch, the bladder, the other pain… maybe my brain (pain) signals are just all a bit wrong – i just hope that the doctors can intelligently help me to understand it and suggest medications that may help with more than one thing, so that i don’t end up taking many more drugs, overloading my poor body and wondering what side-effects are coming from what. Already the POTS specialist wonders if Midodrine is contributing to my itch – i really don’t want to have to stop taking it to find out…

I do want to try to find some answers, even if i don’t really want to take more drugs as things just seem constantly a struggle, the itch has really got me down and just feels like the last straw on top of all the other symptoms i have. It affects my sleep and rest in the day, creates a stress reaction which is very physical and draining and it has really been getting me down. How can i manage my basic condition when i have all this discomfort? I am certainly not getting out of the house much and my quality of life feels almost as low as it has ever been, though i find this hard to measure. I really have been feeling the last year that although the Midodrine has helped to control my POTS symptoms to some extent; they are still present, progress has plateaued and other things have come in to take their place to disable me. The years just pass and so many ongoing symptoms do not seem to be addressed; like my back problems which i have had from day one, literally. I cannot believe that a) there is nothing that could help and b) that spinal health will not affect my overall health, particularly as many problems i have a neurological and the spine is pretty important in carrying messages etc from the brain… This is a subject for another post, and i start to ramble – just needed a little rant!!

Good things: my mum is visiting tomorrow, so i can have a moan, watch her weed my garden, have some fun, and be distracted from it all for a few days – i am really looking forward to that 🙂

I had three visitors last week (one, then a couple) and it was a full on social week for me with three evenings (had a break in between) with talking and catching up. It felt quite strange in a way and i have lost some confidence in face-to-face social interaction (except with family etc) but i really enjoyed it, coped pretty well energy-wise and felt ok to interact most of the time (and i want more! I resisted the urge to chain them up and keep them here). I did have a major crushingly tight headache which lasted about 3 days solid and other flare-ups as a result of the exertion, but i feel it was worth it for the pleasant distraction from my woes and a great break from the usual routine. I certainly can’t visit anyone else at the moment, so i may try to encourage people to come to me, though it is always a gamble and a certain amount of stress/pressure. Well, we are all accustomed to the “no pain, no gain” way of life, eh?

ME/CFS Awareness

ME/CFS Awareness

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