May 9, 2021 at 12:36 pm #194545Joint Pain
Many of us with FHSD are used to muscle pain, but this past six months I have been developing body wide joint pain. Unrelieved by my medical cannabis, and only helped in part by Tegretol. Access to a GP is almost impossible due to covid, and my physios are somewhat at a loss. Many suspect it is because joints are loose due to the FHSD, but I have it in my fingers, neck and many other places. I was just wondering if anyone else, especially with FHSD, has experienced these symptoms, or and I unusual (well more unusual than I usually am).
So many love songs, so little love.May 9, 2021 at 5:45 pm #194546Reply To: Joint Pain
could be one of them normal aging ailments. winter exacerbated Arthritis?
I had a relatively low pain year last summer as it was warmer. According to Facebook memories I was sitting in my garden in the high 20s V today I’m huddled in a shawl, big socks and a hot water bottle with heating up to 25. Hands and feet very ache and stiff with cold damp weather
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010May 10, 2021 at 12:52 pm #194554Reply To: Joint Pain
Thanks for your thoughts Cat as ever. However, getting old? Really? I am only in my late 60s and , yeah OK, I am worn out. Arthritis has been ruled our by x ray as there are no arthritic changes , hence the dilemma. It was a relatively sudden onset when my un diagnosed rash re appeared. Blood sugar went through the roof again, and I have been worn out ever since. It had also brought with it a very much weaker body. Just wondering if it is another step along the road of FHSD. Are my joint getting more loose as a consequence? Don’t like not being able to diagnose things.
So many love songs, so little love.May 10, 2021 at 9:30 pm #194563Reply To: Joint Pain
Hi Mike I have opmd and I’m getting joint pain plus pain on one side of my back. I have osteoarthritis in my right knee and a sharp pain in my left hip with some movements, I don’t have any rash and I’m only in my late fifty. I have the body of a ninety year old lol.Crazy catParticipantPosts: 0Joined: 27/01/2019May 12, 2021 at 12:41 pm #194597Reply To: Joint Pain
Thank you all for your thoughts. I have two attacks of the rash, which is currently undiagnosed, the second attack late last year and into this, began a long tern illness. Fatigue, flu like symptoms, blood sugar out of control, short of breath the list goes on. I was referred 18 months ago for investigation of the rash which the ‘specialists’ believe is scabies despite not showing the correct symptoms and treating it several times. I began on a ventilator during this time as breathing was, and is, much worse and is getting worse, despite using the machine. I use it twelve hours a day but I still awake very tired. I will be speaking to my ventilation physios about that when I get back from my ‘normal physio on Thursday. I have no discoverable evidence of arthritic or rheumatic changes. My best guess is now fibromyalgia, which fits most of the symptoms I have. I will discuss it with the doc when I can get an appointment in a couple of weeks and let you know.
So many love songs, so little love.May 14, 2021 at 9:21 am #194639Reply To: Joint Pain
Hi Mike, I do hope they find out what’s wrong soon and hopefully they will be able to help with your symptoms and put your mind at ease. Md seems to have other conditions as well as I’m sure from what I have read on here most of us do. Wishing you and your family well. CcCrazy catParticipantPosts: 0Joined: 27/01/2019May 16, 2021 at 12:51 pm #194670Reply To: Joint Pain
Thank you so much for your kindness Cat. I have not long been back from physio a long way away, so hence the delay. Sadly the pain is worsening, but I do try to keep optimistic. at least I can sleep. The irony is that I managed to get the muscle pain under control, then this lot kicked in. I must have been really bad in a previous life!
So many love songs, so little love.May 21, 2021 at 1:13 pm #194764Reply To: Joint Pain
So, I have finally seen the GP, indeed my own GP. I outlined my problem and he , like me, is stumped. apparently I have a complex medical history, like that is a surprise. Blood was taken to try and determine if anything was amiss. So far no reports from that. The best idea so far is fybromyalgia. if true then the outlook is not very pleasant. SO I am now on even more pills taking prednisalone in large doses too.
I do often think back, especially now, about my health history. I never had a day off school or work until I was nearly 50. What happened? Sorry to moan about things as I know many are far worse than me. But just thought I wold fill you all in.
So many love songs, so little love.May 21, 2021 at 9:51 pm #194769Reply To: Joint Pain
Prednisolone is offered to alot of MD sufferers but be careful Mike as high does of prednisolone cause weak bones/bone density and high blood pressure and increase in blood sugar in which I remember you saying you have diabetes so it can worsen diabetes.May 22, 2021 at 1:17 pm #194771Reply To: Joint Pain
Sorry to hear that you are still not well Mike. Whenever I look at the messages here I sometimes think I have an answer. Only to find that you have already answered in a much better way that I could!
I wanted to comment on the doctors. It’s incredible when you see a doctor then he replies to a question with something like “well you do realise you have a serious condition “. Sometimes I want to say “really I haven’t realised!
DavidDiggers14ParticipantPosts: 2Joined: 16/11/2014May 23, 2021 at 1:19 pm #194773Reply To: Joint Pain
Joe thak you for your thoughts. My blood sugar is through the roof, and consequently cant stop drinking. Not really my thing. Almost done with the treatment now so when its done it is done. I have another major concern too that I might one day get a repeat perforated bowel. Just about survived the last one, the next I doubt I will. Thus another reason not to use prednisolone. Of course of the other side of the coin it has made some difference. The pain is still there but I can move a little more freely, rather like early days with FHSD pain.
Diggers, I also appreciate your thought on doctors. Medical staff do often say things like tha simply to remind patients that they have a serious condition. Just think about how we manage MD. WE are almost encouraged to try and forget it and carry on as best we can, so we do. Needless to say we are noticing what we have each day, each minute even, but we put it to the back of our minds, and thus may not take it with the seriousness it deserves sometimes. So much easier to remember in acute problems like when you have a broken leg, but with MD which you may well have had for some years, it becomes our norm. Thankfully I suspect most of us know a lot about our own conditions and can make good choices about life.
With that in mind I would offer my own GP view. When I go, as I did recently , because they know nothing about MD and they also know I have been in the trade, I usually get “What do you thin we should do here?”. It does help for me at least. Especially as they listen too me as well.
So many love songs, so little love.May 23, 2021 at 6:04 pm #194774Reply To: Joint Pain
Hi Mike hopefully will all work out for you.
What is issue with your bowel
I had another issue with left side stomach ache, around 5 years going to gp with no follow-up.
2 weeks ago was all night laying on floor with massive pain, called 101 in morning bypassing gp practice
Had CT scan and been diagnosed with diverticular diseaseMay 24, 2021 at 1:37 pm #194790Reply To: Joint Pain
A number of years ago my bowel split creating, I believe, a 6cm hole. You will appreciate that we all have our fair share of pain with MD but this pain was beyond comprehension for me. After taking a huge risk and going to hospital in a nearby town i was operated on and got better. However, it was very close, with my temperature rising I was close to my organs shutting down. Since then nothing suspicious was to go inside me, no aspirin, no ibuprofen, not even curries, lest it happen again. But thats life. On the whole I eat very. little, and what I do eat is very bland as I am not really interested in food or eating. Beginning to have episodes of IBS now, not certain why, but it comes and goes so I can deal with it for the most part.
SO be careful now with what goes inside. I am sure you have been told that ad nauseam, but it will help.
So many love songs, so little love.May 25, 2021 at 11:47 pm #194833Reply To: Joint Pain
Hi Mike yes I can’t imagine the pain and offcourse high temp due to foreign items in body from split.
Was it colon or small intestine? Probably colon I guess
did they know what caused it, previously was you diagnosed with diverticular disease also.
I find IBS is what they say when they don’t know why, maybe its time for a colonoscopy could be diverticulitis or something eles.
At very least I would get a CT scan with dye injection of Lower bowel as previous issue and current symptoms
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