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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?

I decided during the last couple of weeks i needed more than just massage to deal with my wreck of a body – the last couple of months i have had much more tense and more painful muscles all over and my upper back became so uncomfortable recently that i had to go to lie in bed in the day just to rest it, as there was no sitting position i could find that worked, and also i had to only lie on my back in bed as being on my sides was became too uncomfortable after just a few minutes… not very helpful when i already have enough problems being comfortable in bed and sleeping well.

I found an Osteopath online who was close enough that taxis would not cost too much, read his website and sent him an email. He sent a lovely one back and his charges were less than i feared, so i gave him a try today.

He was great. He says he doesn’t know if he can help me much at all as osteos rely on the body’s natural ability to heal in order to get better, once they remove whatever is blocking that. He says my regulating systems are so all over the place (the autonomic nervous system which causes so many of my more severe symptoms is very key to this) that he has no idea how it will respond. We are giving it a go anyway and i am sure he will tell me if there is no point.

He had really researched POTS and seemed to know a lot about ME and the autonomic nervous system and i was impressed by his attention to detail and enjoyed talking to him. I think i like him and will enjoy my visits which is important too.

We are focussing on making my back more comfortable/less painful, but he also says my lower back is BAD (i thought it was fine but he says the pain signals must have been switched off as it is soooo baaaad!) and that could be affecting my pelvic pain/bladder/ibs etc so he will try to help that too. My head apparently is all baaaad and solid as a rock, but i knew that, as it is always tense and painful. He spent 2 hours with me, despite me being late (taxi couldn’t find our house… again) and the appointment was only for 90 mins. I felt very spaced out and dreamy afterwards and my back does feel different, if still sore! He was very gentle – it was pure Cranial Osteopathy which is basically minute movements, mostly you can’t tell anything is happening, though he kept making discouraging noises like for him it was all very dramatic and he kept finding more bad things wrong with me! It was quite funny!

He has leant me a support pillow (memory foam?) to “try before i buy” as i was considering it but wanted to test to see if right for me before shelling out mega bucks – and i lay on it this afternoon and it was like a revelation! I could actually feel, when on my back or side, that my neck was perfectly straight and there was no pressure on it! i am sure it will help my neck and comfort levels when sleeping so he ain’t seeing it again 😉 I think the amount of time i spend in bed it could really be affecting my neck tension and may help. Hurray!

I will see how it is after i have actually slept on it, as this afternoon i collapsed into bed in a zombie state for three hours when i got home, but couldn’t sleep as such; it was a pleasant waking dream-like state. I actually felt like i was on drugs when in the taxi home; my speech was slowed and an effort but it seemed really funny to me! The taxi driver thought i was being very odd, i could tell, but i thought that was funny too! We had a surreal conversation about the weather…

The Osteopath also recommended a very expensive week-long probiotic treatment, which i will look up online, but may not jump at that quite so readily! Will see how things go…

ME/CFS Awareness

ME/CFS Awareness


June 2020