Fibromyalgia is a problem: My fibromyalgia is very... - LUPUS UK


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Fibromyalgia is a problem

Gillyg profile image
18 Replies

My fibromyalgia is very bad at the moment, I am finding it hard to control pain also finding my memory is worse remembering names etc. If I say to anyone about my memory they just say it is my age, this is frustrateing me, I don't think it is. I also have SLE and SS. Does anyone else get a bad memory when they are not feeling great. I just wish some one would believe me it would help me cope better. Thanks for any advise or just listening to me.

18 Replies
franklin853 profile image

I have SLE and have also been told that i may have fibromyalgia and i find that i cant remember alot these days. Is it to do with the condition do u think?

Gillyg profile image
Gillyg in reply to franklin853

Well I recently went to my consultant feeling very bad and he said it wasnt' my Lupus at the moment it seemed well controled (I don't always think you can go on blood tests) he said it was my Fibromyalgia all the pressure points were very painful. I am finding it is now in my neck and base of my head I can hardly move my head because of it. So I am sure if you can feel like this it has to affect your memory a little. Hope you are ok.

i get very confused with the sle

Gillyg profile image
Gillyg in reply to

So do I, I have been diagnosed since 1991 and suffered quite a few years before it was diagnosed. I was once told by St. Thomas hospital you have to go on how you feel as much as the blood tests but my consultant doesn't seem to say that. So much controversey. I wish there was just an answer so you get believed about how you feel. Try and read and talk to people as much as you can. wishing you well.

mojo profile image

Hi there,

My sle has escilated in the past 8 months with sever mucle pain-spasms. numbness and pins n needles, i have found that my memory has got a lot worse in these month and feel very confused at times, i asked my consultant if this was fibriomyalga as well as the sle, she stated that i do have this also but didnt seem concerened about this as the sle is worse at this time, and there is nothing else they can give me anyways, as to the memory and confusion she kind of dissmissed this again, so nxt visit iam am going with my pen n paper with prepared with questions and i hope to get answers this time

i always leave there feeling more frustraighted and that is not good for ye either eh. wish you well lets keep looking for some answers guys... Mo

Gillyg profile image
Gillyg in reply to mojo

You must have bloods that say your SLE is flareing but that is a problem when talking to doctors, it is all they see and don't listen to what else you are saying. I have gone to my doctors over the last two years with infections and I have been told they don't know anything about Lupus. Well I know the drugs I am on don't help with infections but they need to stop thinking everything you get is to do with SLE. Why don't they make life more interesting for themselves and look into problems. I get so frustrated. I feel I have to just put up with the pain and lack of sleep. It is a good idea to take written questions then if one isn't ticked off then they have avoided answering it. Good luck.

Amberann profile image

Gilly & franklin, i too suffer from fibromyalgia and attend physiotherapy, during my appoinment last week i just happened to mention to my physiotherapist that im becoming so forgetfull etc and right away she said i had whats called fobrofog!! id never heard of it before and i actually laughed :) she went on to say thats its common in sufferers like us with fibromyalgia and it has actually been recognised...hope this has helped you both in some way.

vonni profile image
vonni in reply to Amberann

yeah I was diagnosed withFibro before They decided I had Lupus as well, the Fibrofog is awful, I think the memory is probably the fact that we dont get proper sleep because of the pain,and having to cope with the pain takes up all the spare whatever energy we have

Gillyg profile image
Gillyg in reply to Amberann

Well at least I have a name, could be useful for not turning up to meet people i don't like.(only joking). It isn't funny really. Could I ask why you have physiotherapy is it for your fibromyalgia?.

I am glad that it is recognised by professionals I should mention it to my consultant next time I see him. Never like to before because friends always say it happens to them aswell, but it does feel different to just forgetting normal things. Keep well.

thegov1uk profile image

Hi Gillyg,

You are not alone on the memory thing but the consultant didn't think it was Lupus related for some reason...funny how it is much worse when i have a flare and virtually no trouble at all othertimes, I have been so bad that I have set off for an hospital appointment and ended up roaming around a supermarket shopping lol totally forgetting about the hospital. It is so annoying when they think you deliberately miss appointments for the fun of it. I have even used sticky notes in the car etc but soon find that i am easily waylaid. Keep trying pet we Lupies will get through it... Erm! what was i talking about ?? rofl

tremarel profile image

I have the same problem, my memory is awful. I forget words in mid sentence. It really winds me up. I have lupus & fibro. The pain from the fibro is so debilitating. Every part of me hurts, just touching my skin is painful. I have tried amytrptiline

& norotryptiline but they don't work for long & I find it hard coping with the side effects. So chin up you are not alone, God Bless you

Gillyg profile image
Gillyg in reply to tremarel

Thank you for saying that. It has always been my Lupus that has affected me in the past or well I thought but it is the Fibro at the moment. It is truely dredful. I have learnt over the years to not let it get me down and everyone says how good I am because I never moan. Most people think I don't work because I don't have to. That isnt the case.At the moment I am fighting to not moan because if I do It will be winning so will try very hard not to give in. I went to my sons on Sunday I hadn't seen him for 3 weeks (he only lives 5 mins away) I was in so much pain I nearly didn't go but don't like to not go if I said I would. He popped out and his wife who is 4 months pregnant sat there telling me how tired she was and never even asked how I was and didn't get a cup of tea. Honestly I am still fumming over it. I learnt my lesson. Stay in next time and let them come to me. Sorry moaning I just said I never moaned. dear me good job I have a sense of humour.

Gillyg profile image
Gillyg in reply to Gillyg

Sorry forgot to say keep well.

tremarel profile image

You to keep well. The thing is no one unerstands. I always say if someone got inside my body & felt just a bit of this pain they would go off their heads. I don't like moaning either because I'd be blooming moaning all the time. I do try to keep cheerful but feel but it is difficult isn't it. I used to think it was the lupus but they say that is pretty stable but then I don't think they really know. I had a kidney tranplant fifteen years ago so I'm always checked regular. I'm on immunoglobulin infusions as my immune system is shot. But hey always look on the bright side da da da !! Keep smiling always remember you're not on your own. Take care ;))) x

Lorelei profile image
Lorelei in reply to tremarel

Gillyg, I am a new member, and want to reply to your question first. I have SLE and fibro and great trouble staying asleep because of pain. Every once in a while, I get better sleep and the next day, my memory is much better! I really think that lack of sleep is the cause of my not being able to find the words I want and forgetting to do important things.

I hope that you will find an answer that works for you!!

Kedaco profile image

My pain is really bad at the moment and that is going to compacted on your state of mind I find if I am put under presser I can forget the easiest things to remember. you must keep your mind active and reading is a good way

weather it is reading a book or reading the news and stories. People will say silly things like it is your age it is just in human nature don't worry about it. If someone has asks you for something or to do something and it is one of the persons who said it is your age say sorry I forgot it must be my age lol most people don't know what we go through and sometimes you just have to shrug your shoulder and expect there ignorance. Best of health and luck to you Gillyg.

Gillyg profile image

Hi Kedeco. Yes I do try and read I love just disappearing into fantasy away from health issues. I have had 3 mini strokes my last one shortly after I wrote and feel that has made an impact on my memory, but you are right we need to keep our minds active I like sudoku also. Hope you keep well. Xx

Natura profile image
Natura memory problems are so bad I can't remember movies that I have seen. Can't remember from one minute ago. Never use to be like that. It is husband and children r understanding and we joke about it. My children shouldn't have these worries at such a young age. They say, mom, do you remember that? It breaks my heart... I try to take it lightly and not worry. I am hoping I will get my memory back someday. I worry about Alzheimer's. I take one day at a time. Be patient with yourself. So many ill people these days with all kinds of problems. Take care...

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