May 13, 2020 at 1:58 am #187745Flare up
Not been on the forum for a while.
Can I enquire if any of you have times when you think your condition is flaring up. If so what gives you that opinion and what symptoms do you get.
If you have them how do you manage flares?
Noticing quite a few things at present but not keen on contacting my neuro.
Thanksmiracle77ParticipantPosts: 267Joined: 17/08/2011May 13, 2020 at 1:55 pm #187753Reply To: Flare up
Welcome back. I presume you mean does our condition worsen for a while and then return to ‘normal, as opposed to being made worse by too much exercise or similar? I would suspect that that is the case for many people here, it certainly is for me. I have flare ups of my pain, sometimes due to over committing myself to things I should not do. I get increased pain from weather changes and various other stimuli. I get increased weakness at time (I believe from another condition I have contracted). So yes flare ups can happen. The difference being they come and they go. If your flare ups are coming and not going or coming and not going for increasingly long periods of time then it changes from flare ups to developments. That is something which you should seek medical advice about. We are all aware of our ‘baseline’ with our respective conditions, and if that condition moves away from the baseline. however, if the changes are small or subtle we may take no notice. If you believe that there are permanent or semi permanent changes taking place, do please talk to someone. If you do not wish to see a neurologist, who mat well be the best person to ask advice, then perhaps talk to your GP or even chat on here.
So many love songs, so little love.May 13, 2020 at 6:15 pm #187763Reply To: Flare up
Yes I think I do! I have been having quite severe shoulder pain over the last few days and gets so much worse when sleeping or not moving. I have been getting it more frequently over the past year or so but it is just so painful. It feels maybe a bit like a spasm at the start and eases off after about 24 hours and then it is just very sore for a few days. It really is unbearable when it first comes on. I always wonder if it is something unrelated but I don’t know :/ it seems to come on after I try to get things down from shelves. Does this sound similar to what you get? I have LGMD. Take careEms15ParticipantPosts: 0Joined: 31/07/2018May 14, 2020 at 11:56 am #187776Reply To: Flare up
In answer to the last message, yes I get pain in lots of different places,I often wake up in pain. This morning all of my left leg was so painful, also get a lot of pain along my collar bone and back of head I have opmd. Along with the main symptoms of my condition flaring up. CcMay 14, 2020 at 12:41 pm #187780Reply To: Flare up
Ems, I have always believed that having two conditions at once is entirely possible, nay, probable. I always tried to teach my students that, but it was hard for them to accept. I have three potentially life threatening or altering conditions at the moment, let alone old age. It is also probable, that they could share some symptoms, so I really would encourage you to see your GP and report the matter. It may be something easily recifiable, it may need different medicaton, it may be related to your LGMD, but unless you ask you will never know.
So many love songs, so little love.May 14, 2020 at 12:45 pm #187781Reply To: Flare up
I felt I was on the verge of one yesterday. I had been using my shoulder too much the day before without realising. Using my phone too much, writing or using my fork a lot to eat wear me out if I haven’t got the support just right. Stubbornness keeps me doing these things but I pay the next day. Yesterday, I vowed not to do much at all which I sort of achieved.
The weather and not moving enough at night also have a big impact on how I am mobility or pain wise.
Constant balancing act isn’t it?
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas AdamsMay 14, 2020 at 1:48 pm #187790Reply To: Flare up
Hi everyone. Nice to hear everyone’s replies might be worth speaking to the GP about it. The GP did refer me to the muscle physio specialist but obviously that may be a while away now. I had the letter to do the shielding because of a bit heart failure but go to work at the weekends when no one is there so I’m maybe over doing it a bit when I’m there. We do meals for elderly and vulnerable or anyone really. (I’m a bit obsessed with my work :)) I think everyone is right you really do need to balance everyday things and I’m not very good at that!Ems15ParticipantPosts: 0Joined: 31/07/2018May 15, 2020 at 12:38 pm #187810Reply To: Flare up
I would agree CrazyCat, but more with “defiance”. I try to carry on as thought the MD is not there, that does not get me anywhere except a world of pain and not able to to do much the day after.
So many love songs, so little love.November 10, 2020 at 5:49 pm #190752Reply To: Flare up
Hello, good to hear you all talk. i am a bit lost in all this as i have not been properly diagnosed.
but suffering for a couple of years now, is it possible to get a blood test done? is it always hereditary.?
I suffer with muscle problems and it is complicated as i first just had nerve pain in my inner thigh and dmy left foot sometimes turns inward. but i am worse for travelling and some days are better than others, where i can get out and walk. 2 years ago i was on the back of my husbands bike and still very able to do things.
It would be nice to know if any one is going through the same kind of things?
I see an osteopath which does help.November 10, 2020 at 6:33 pm #190755Reply To: Flare up
MD is not necessarily a hereditary genetic condition, sometimes the gene mutation can be a one off – sometimes called de novo.
Have you been told which particular type of MD your doctor thinks you have? Blood tests or biopsies are possible to achieve diagnosis but it can be like looking for a needle in a haystack without some idea of where to start.
I think you’ll find that there are many going through the same kind of things and please feel free to ask us anything or even just get it all down – I know this helps me.
Have you ever contacted your regional care adviser? I will post a link to the website page that tells you how to get in touch.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas AdamsNovember 10, 2020 at 6:47 pm #190757Reply To: Flare up
thank you SAR78, my physio originally referred me to a neurologist because they thought i had something wrong with my back because of the way my foot is., but the scan at the time showed my spine to be ok, thats why i think it is muscular .
My doctor does not know about MD, we have not even discussed it so i have really had no answers from anyone.
I am local to Devon, Exeter area.
yes it would be nice to chat to someone.
as i really dont know what it is? thought it might be Fibromyalgia.
its like jumping into a haystack and trying to count the straw…November 16, 2020 at 10:51 pm #190949Reply To: Flare up
Sorry it’s taken me a while to respond with those links.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
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