Living with..... Polymyalgia. Updated

babymoo

I have suffered from fibromyalgia for the last few years and was diagnosed last year. I find that I am in a lot more pain and struggle to move when it is colder so keeping warm is vital. I invested in an electric blanket which has been the best money I think I have ever spent. It cost £60 from argos, it has dual controls so my DP doesnt have to have his side on if he doesnt want to and it really has made the world of difference to me.

I borrow a wheelchair from british red cross if I know i'm going to be going somewhere that involves a great deal of walking as I will usually suffer for it for a fair few days afterwards but I don't let it stop me from living my life. It did for a while but I also realised its actually a mindset aswell. I keep my mind active and listen to my body, if i need sleep I sleep, this greatly reduces my fibro fog and memory loss.

Keeping active is also vital, I get just as much pain from doing nothing as I do from doing lots so its all about finding an even keel and a balance and your mum will find this in time. Best thing I can tell her to do is to listen to her body and do what it wants to do. I also found that cutting wheat and lactose out of my diet has greatly helped with my motivation, I dont feel so bloated n sluggish.

I would also suggest reading Living with Fibromyalgia as that really helped me to realise that all the little things i'd been feeling and thinking were normal as it was written by a man who had cared for his wife who suffers from fibromyalgia.


ETA: I get DLA high rate mob and mid rate care and a lot of that is on the strength of my fibroymalgia and the affects the tablets have on me and the care needs that the side effects give me rather than the care needs that fibromaylgia leaves me with if that makes sense. However I did have to go through 2 appeal processes to get it but I refused to give up without a fight.

yvonneem_2

Thanks Babymoo I feel exactly the same as you do. The pills are all well and good but they sometimes make you feel worse in other ways. Also glad to hear that you got the DLA in the end as there is hope for me yet. I don't have much fight left but I will keep on trying.

jetta_wales

Thanks for the replies, sorry I'm not writing as much at the moment but we've had some more bad news today (unrelated) so my heads all in a muddle at the moment. I will pass on your experiences though and look for the book too.

Thanks again.

ankspon

starchild1972 wrote: »

I have had fibromyalgia, secondary to hypermobility syndrome for 15 yrs. There is no actual blood test for fibromyalgia. Actually there is no proper "test" at all, it is a symptom based diagnosis. I also now have ankolosing spondylitis as well (oh joy).

I suffer with AS and my wife with Fibromyalgia,lots of pills and pain in our house.

starchild1972

davidhwdn wrote: »

starchild1972 wrote: »

I have had fibromyalgia, secondary to hypermobility syndrome for 15 yrs. There is no actual blood test for fibromyalgia. Actually there is no proper "test" at all, it is a symptom based diagnosis. I also now have ankolosing spondylitis as well (oh joy).

I suffer with AS and my wife with Fibromyalgia,lots of pills and pain in our house.

DH has CFS as a result of CRPS (Complex Regional Pain Syndrome) after a fall while doing DIY (idiot).
3 out of 4 of our children have growing pains with hypermobility which is seen as a pre-warning to fibromyalgia. Good 'ere innit! It's just pot luck whether they develop it or not.

I am suffering at the moment with the warm weather. Give me winter anytime

ikati5

I have suffered from fibromyalgia for about 5 years, official rheumatology diagnosis 2 years ago.

I take no medication prescribed at all, I take 2 Ibuprofen in the mornings to get through the muscle pain and stiffness I wake with everyday regardless of anything!

I can tell you that stress is a big contributor, any stress at all will make a huge difference. Sleep is necessary, the more sleep you can get the better you will feel, any disturbance in sleep pattern or waking throughout the night will make for a bad day, possibly days.

Being upright, active and determined to live your life is the only way, the more you sit about the worse you will feel, the more resting the more muscle wastage, etc etc.

I work full time, I have bad days, sometimes bad weeks, I rarely get two good days together but I know the difference between good and bad and I have learned to appreciate and relish the good days.

I hope your Mum starts comes to terms with it and doesnt let it ruin her life. (I am 44);)

alexandrajj

starchild1972 wrote: »

davidhwdn wrote: »

DH has CFS as a result of CRPS (Complex Regional Pain Syndrome) after a fall while doing DIY (idiot).
3 out of 4 of our children have growing pains with hypermobility which is seen as a pre-warning to fibromyalgia. Good 'ere innit! It's just pot luck whether they develop it or not.

I am suffering at the moment with the warm weather. Give me winter anytime

This is really interesting as my DH also has ME/CFS and 1 out of our 2 children have growing pains with hypermobility. I never knew that it could be linked to CFS/ME/fibro!!! You learn something new everyday....

sunnyone

Fibro has no blood test at all so god knows how she has been diagnosed by one, fibro is a genralised pain condition that is wrongly called many diffrent things such as soft tissue arthritis which couldnt be more wrong since arthritis affects soft tissue anyway but can be proven.

ME and fibro are linked in that there is no test to prove either condition apart from the elimination of all other conditions and thats no basis to claim DLA for until it pans out to see how she is going to get on in future but I know the rush people get into to make sure that they can claim to be disabled before they are 65.

See what her GP says and the changes in her meds do, she hasnt got a specialist or you would have mentioned it so seeing a specialist is next long before a DLA claim.

jetta_wales

sunnyone wrote: »

Fibro has no blood test at all so god knows how she has been diagnosed by one, fibro is a genralised pain condition that is wrongly called many diffrent things such as soft tissue arthritis which couldnt be more wrong since arthritis affects soft tissue anyway but can be proven.

ME and fibro are linked in that there is no test to prove either condition apart from the elimination of all other conditions and thats no basis to claim DLA for until it pans out to see how she is going to get on in future but I know the rush people get into to make sure that they can claim to be disabled before they are 65.

See what her GP says and the changes in her meds do, she hasnt got a specialist or you would have mentioned it so seeing a specialist is next long before a DLA claim.

As I said DLA was something we were talking about way before this though of course like many she didn't like admitting that she has the needs she does but this would be just another thing on the list for her so it doesn't affect it that much.

She has another appointment in a week with a different doctor that the one she's been seeing wants to get her to see too and from there she should hopefully be given a referal to a specialist.

killerpeaty

Others have said all the medical side but I'll tell you my experience.
I'm 21 and it started at 17, I found out the name for it only a few months ago when I saw the specialist. I'm at uni and it makes everything really hard, I avoid taking out books because it's too painful to carry them, I worry about walking and going out in general. I can't wear an off the shoulder bag because it hurts, I need help with cooking and writing. I can't sit or stand for that long without pain (about 5 minutes for standing and 15 for sitting) and because of this I'm called lazy! I regularly have days too painful to stay awake, all the rest of the time I'm tired. (I'm up this late because I'm worried :-/ )
There are a host of things I can't do that I haven't mentioned, but through the support of my boyfriend and parents (and my siblings who incidentally also disabled with completely unrelated things!) have helped incredibly. Let your mum know that you'll lift the pans if she can't, my boyfriend doesn't do my cooking, but he lifts and opens and it's so useful. But it's not admitting defeat either. Offer to walk her to the shop, it stops the fear that something will knock into you and you'll be stuck. Regular injections of tea! It's a godsend! Seriously, I would not have gotten through any education without it, it perks me up to the point that I nearly don't feel tired. : ) I know these all seem small but it makes a huge difference in day to day life, at least to me.