Fibromyalgia

Yes, &Grandma..*so sorry to hear of all your suffering. How do you cope? It really is ignored a lot. I think much time and miney needs to be spent on research.

Grandma, I am so sorry to hear of all your immune difficulties. I can't take any meds at all for my fibromyalgia as they kill off my white blood cells, and as I've had cancer once, I definitely don't want it again. So I see a homeopath, who is brilliant. Doesn't cure the fibromyalgia but helps greatly.
Baggs, I know what you mean about diagnosis. It was at least ten years before I was officially diagnosed, and then it was by my chiropractor! He sent me to my gp who said "oh yes, it probably is!". I've probably had fibromyalgia for over 25 years now, and sometimes I despair of the NHS. They can be so wonderful with so many things, but fibromyalgia isn't one of them.
Annep - oh dear, an expensive lesson.

MysticalUnicorn I agree about physio. My doctor decided it might help a couple of months ago with one pain. I had to explain to the physio(therapist) that moving my body might actually cause more pain. So fifteen minutes later came away with a sheet detailing one exercise that might help ( basically folding arms and raising) a list of items the physio sold and minus £50 cost. helpful indeed.

It was because of all the exercise I did, and the odd effects it had, that first CFS/ME and then fibromyalgia were diagnosed in my case. Actually, the diagnosis took more than a decade because other possible things (like asthma, which three separate GPs diagnosed) had to be eliminated first.

I am not asthmatic. I have a low peak flow but it doesn't change.

I was diagnosed with fibromyalgia many years ago after I eventually admitted to my GP that I thought of my pain as an alien in my body that jumped from one place to another at random! It made sense when I read up about fybromyalgia and saw the different places it could attack. I was given anti depressants, as painkillers did not touch it, but I did not want to take them and gradually I built up my exercise routine which helped enormously. Even now if I don't take regular exercise the pains start again.

Interestingly several years later I developed frontal fibrosing alopecia, losing the hair around the front of my head, as well as body hair and eyebrows and lashes. The dermatologist asked for a detailed history and after mentioning fybromyalgia and years of random 'hives', skin rashes she suggested these were all autoimmune disorders. My immune system was actually attacking different parts of my own body. Everything seemed to fall into place.

Last week my ring finger on the left hand suddenly went blue as if it were bruised for no apparent reason. I googled it and it fitted Achenbach's Syndrome, harmless and self limiting and guess what..., possibly auto immune disorder. I shall check at my dermatology appointment next week. I wonder what my anti bodies will attack next!

Yes fibromyalgia is a struggle, and difficult to explain to anyone who doesn't have it. Interesting that you don't have the pressure points annex, but be grateful for small mercies!!! Out of all the symptoms I think the depression is the worst.
Lynne Physio and painkillers haven't worked for me either. I think gps send us to physio just so it looks like they're doing something.

My 37 yr old son has it. He can hardly put his feet to the floor when he gets out of bed. He also has pain in shoulders, hands, ankles and back. He tried Physiotherapy and various prescribed painkillers but is now trying swimming.

I was diagnosed with FM and also CFS/ME about ten years ago. But I don't really have trigger points which is strange, so I'm not convinced that it was a true diagnosis for my illness. I am prediabetic which means I'm supposed to have a walk every day and eat healthily. Walk every day sounds good in theory. Life is a struggle. Bad days outnumber good. What can you do only struggle on, enjoy the good days and try not to worry. Doctors where I live couldn't care less. I send as much as possible to laundry. When we can organise it we will pay someone to help. (husband finds it difficult to manage). Sorry I'm moaning. You've got me on a bad day!

I saw a rheumatologist 20 years ago who diagnosed FM. He ordered a regime of 5 min gentle walk, 10 min rest, and slowly over 3 months increase exercise followed by increased rest. Household chores even now 20 years on are organised to avoid stressing any muscles, I spread the tasks, I Hoover one room at a time not whole house, clean one window at a time, take care emptying dishwasher and do it piecemeal, ironing tackled a few garments at a time, gardening chores are approached in a similar manner. It seems a bit chaotic to approach tasks in this way but it has certainly helped me. At his suggestion I follow a gluten free diet and drink lots of water, I have under active thyroid and feel better if TSH is lower than 2. Won't pretend I don't have bad days but they are outnumbered by the better days.

Yes, my DD too.
There is no easy answer for pain relief, but deep massage helps a bit.She cannot walk much at all.

Apologies, travelsafar, I see that it was your MiL who suffered from that miserable condition, not your mother.

travelsafar, what your mother had sounds much more like polymyalgia rheumatica which does respond well to steroids and affects mainly large muscle masses like shoulders and hips. I was on steroids for it for six years. It has now gone but has been replaced by another autoimmune condition which, at the moment, is affecting my knees.

I've had fibromyalgia for about 25 years now, diagnosed by my chiropractor, not my dr who later agreed that might be what she had been prescribing all those painkillers for, for so long! Great, isn't it. I know what you mean about pacing yourself. It's so difficult to do because you don't realise you've overdone it until you've gone too far. Yes Chrishappy I have all those symptoms too - it's a minefield isn't it. I think fibromyalgia has been around for longer than the medical profession think, and it was called fibrositis well before fibromyalgia. "They", whoever "they" are, believe that Florence Nightingale had it too.

My daughter has. She has been told and discovered for herself that the pain is all over her body, with awful aching joints and with specific trigger points. Also that it does not respond to steroid treatment and is a neurological condition.
My G'mother swore that her intermittent aches and pains were due to fibrositis.

Yes I do. Was diagnosed 15yrs ago. It's a battle to pace myself as when I feel good I overdo things and then suffer with exhaustion for the next few days. Pain, exhaustion, peripheral neuropathy, bad tummy, underactive thyroid. Ache all over. Hugs hurt. I can only say try and pace yourself and be gentle with yourself

I dont personally but my dear MIL did in her shoulders.It would make her throughly miserable she couldnt brush her hair or put her rollers in she could reach to put socks on, hang out her washing or get anything from the top sheleves in her cupboards. Once she was put on steriods it subsided and she could function again, but of course the steriods made her put on weight which made her miserable too.Horrible problem to have.