Fibromyalgia Research

[Pipilifie]

Hi,

I have had fibromyalgia for about 5 years now. It's been an awful slow decline of constant pain particularly in my neck and back and debilitating fatigue.

I have been on a mixture of meds which has helped my quality of life considerably, one of them is Morphine. Every single medical person I see bar my GP gives me the same speal about coming off the Morphine , I'm not stupid and know exactly why they want me to come off it, but when I ask how I will control my pain levels and have any quality of life they don't have any answers for me. I've tried so many different medications and this was the combination that works.

Before I was on Morphine I was bedridden and thought seriously about ending my life. I have children and am married. My husband had to do everything and I couldn't look after my children so felt completely useless and had nothing to offer

My quality of life is still crap. I was let go from an office job because of my memory problems impacting my workload. I wrote everything down, but it still affected me and refused to make reasonable adjustments.After this it severely knocked my confidence in being able to retain a job. I also struggle with finding the right words when I'm tired and struggle with holding a conversation. It's probably self confidence but I worry I sound really stupid in conversations, lots of erms and you knows when speaking, while I try and remember the right words to say what I want to say.

I've been to the pain clinic but it wasn't at all what the GP said it was. The first person I saw made me want to run under a bus. He said It wouldn't ever get better which I knew but was just so negative, I felt awful then said he'd refer me for pain management but it only has a 40% success rate. When I went for my appointment I couldn't do the classes as I don't drive . Public transport is awful near me and doesn't go anywhere near the clinic. Was too expensive to get to by taxi due to distance plus it was a four day course so added all up was too much financially. I did see someone who saw me and told me to steadily increase my activity levels and not over do it. Which I constantly failed at as something would inevitably come up like school runs or having visitors or just wanting a day out. It always just ends up with me having a flair up. Now I just rest when I can and do the things that are important and acknowledge I'll just have to put up with a flair up

I have lots of help from husband who has his own health issues. He even has to help me in and out the bath which is just awful.

I have been following fibromyalgia studies and the one between Liverpool uni and one of the London unis. What interested me about this study is that it suggested fibromyalgia isn't the brain sending pain signals when the body isn't in pain ,but could be an immune disorder. This will probably make a lot of sense to people with this condition who may already have other immune disorders. I myself when being looked at for potential lupus was told I had markers for possibly developing an immune disorder in the future.

I know these studies take years but I feel hopeful for the first time that there could possibly be an actual treatment for people with this condition.

My question is after this long thread ( thankyou for sticking by me so far) what are people's thoughts on this study?
Has anybody heard of any other studies of interest? Anybody struggling like me or tried any treatments which worked for them? Let me know.

I’m jumping in to follow along. I’m at the bottom of page 1 and want to say it’s ALL the things. Take the meds. Clean up your diet. Do the self care and do the tai chi/yoga etc.

I’m massively better than I was using the above strategy. Some of my symptoms are extremely concrete and physical- muscle adhesions- but caused by my body’s reaction to pain and stress, if you like.

I perceive myself as being overreactive so need to be extra careful to look after myself. It’s not the bump, it’s the body’s drama lama mode about having had a bump. I treat myself like a toddler- lots of comfort and reassurance, a rub and a kiss it better and some magic cream!

I was sort of diagnosed with Fibromyalgia many years ago, the pain consultant said to me “you probably have it..” and that was it. I didn’t think I do so ignored it. I have other painful disabilities. I’ve got widespread arthritis, sacroiliac joint dysfunction, SPD still from when I had my son 28 yrs ago, I’m hyper mobile. I suffer with IBS, severe migraines, palpitations and extensive skin rashes.

I went to a rheumatologist a month ago because my GP thinks I have some sort of auto immune disease. He did no bloods, poked every part of me really hard (whoever he’d poked would have felt pain) then said , quite dismissively “it’s Fibromyalgia”. He, also, said I’ve got EDS and probably POTs but I need to speak to my cardiologist about that, he couldn’t be bothered to write a letter. The only advice he gave me was to do exercise every day. I can’t walk unaided so I asked what? He said anything to get your heart rate up 🙄. I have steroid injections for my arthritis, he said there was no point in them because I’ll still feel pain after, I also have my sacroiliac joints denervated to try to control the pain in them, apparently that’s a waste of money. I was given a leaflet and sent away.

I still don’t believe Fibromyalgia is the diagnosis, my orthopaedic consultant and GP are sceptical too. But what can you do?

I've had fibro for many years. I've tried lots but this is what works for me;

Pregabalin for restorative sleep

Spoons theory and pacing

Good CBD to manage pain

Magnesium for sleep and muscles

Regular exercise very gradually built up, my starting point was house-bound. I built it up over years

Losing weight

Cleaning up my diet, an anti-inflammatory one worked for me

Coming off all pain medication (including the pregabalin) and finding it made no difference to the pain, it just fuzzed my brain to stop me focusing on it

Challenging my own perceptions of what I could do

Finding meaning and enjoyment in my work, it distracts me from the pain

Prioritising moments of leisure, pleasure, fun

Attitude change from an `I can't do this because'...followed by pain/fatigue reason to 'I can do this and I will commit to finding ways to achieve it'

Dealing with the anxiety that came with fatigue

Reducing causes of stress in my life wherever possible

Now, unless you knew me you'd never know I have it, and because I'm no longer foggy with pain medication I can work a full time job. I promise it's doable.

There’s no definitive test, so ‘probable fibromyalgia’ counts as a full diagnosis.

The prodding- I did that to DS, asking if he hurt. He said, ‘What?’. Basically what I felt as a hard prod which would hurt anyone , he felt as ‘just a prod’. I realised that other people don’t feel sensitive in the way I used to- like I was bruised. If you prod me now, about 50% of the places are ‘just a prod’ and the rest is painful.

Getting your heart rate up is important. I can’t do a lot of exercise, though I can walk a bit. Sitting in the sauna and steam room, walking through the water, lifting my arms above my head- all those raise my pulse and count as exercise.

A PP talked about gradually increasing her activity levels over years. The occupational health person wrote me a programme. She tested how much I could do in a minute, reduced that by 20%, then had me do it daily for two weeks. If that went ok, we increased by 10%.

So I started with, say, clapping my hands above my head ten times; walking up and down a step ten times. Standing up and sitting down ten times.
After two weeks, increased to doing everything 12 times. When I was doing everything 20 times, they changed the exercise up.
I went from sofa bound and unable to manage the stairs more than once a day, to ’moderately active’.

Don’t give up. Learn to pace (not a cycle between burn out then rest).

I’m really pleased that you’re moderately active, but that’s never going to be me. I’ve got osteoarthritis in so many joints that it’s physically not possible. My shoulders are knackered, I’ve had extensive physio yet my arms still won’t go above my head. I can’t walk unaided and that is never going to change.

I haven’t given up, but I do know my limits.

Sorry @TheFairyCaravan - I think I was just trying to encourage all the other sofa bound fibro sufferers that there is hope. Obviously we all have additional challenges. I do the whole pool, sauna, tai chi routine from fear of losing mobility. I’d love to increase y stamina and strength but there’s no sign of that yet.

Another long-term fibro sufferer here - lots of gentle yoga has really helped me regain some movement and confidence.
This book - Mindfulness-Based Therapy for Managing Fatigue: Supporting People with ME/CFS, Fibromyalgia and Long Covid
amzn.eu/d/gxXoQhQ
is well worth a read. Loads of helpful advice from a clinician who really gets it.

I have fibro, I also have fatigue and severe brain fog but I am not on morphine for the pain. So saying to op that morphine is causing her issues is wrong. I have tried everything that has been recommended to me from thai chi, therapy, cbt, low grade exercise, b12 injections, large doses of vitamin d, pain management course, meditation, physiotherapy, intermittent fasting and acupuncture, as well as different supplements and specific medication, some helped slightly, most didn't help at all. Some of the medication caused terrible side effects. I have to rest and pace a lot during the day. Some days are better then others. Some days I can do things which will be impossible to do another day.

@RaiseYourSkinnyFists Yes poke prod and when was I most in pain, am or pm. There's a Beighton score for hyper mobility/eds which I scored mostly + on bendy back fingers etc so have a look at that. It does sound like you have heds so ask your rheumatologist and look at the Ehlers Danloss websites. All 5 female members of my family have It, my neurologist and my ex who often had shoulder dislocations. Also sounds like you could maybe have pots/orthostatic hypotension but cardio dept would dx this although ime they're a bit clueless & Dr Matthias as Tittat50 said is an expert & I think a Dr Gupta. @Tittat50 Thank you so much for your considered and detailed reply. Gosh it's so complicated isn't it and we're not cookie cutter textbook sufferers. I did an intensive guided vegan diet, it was tough (and I thought I ate healthy!)with horrendous flu like symptoms at the beginning, upshot was I got my saliva back and using eye drops less with more good days now with nerves, joints etc as I was bed bound. The nutritionist I saw is an immunologist & believes there are many causes for ai diseases. She said it's a bucket that gets full of bad stuff then one final thing tips it over into a full cascade with diet a huge contributor but it can take 10-20 years & smolders away . I think you're right that hyper mobility is one underlying cause. It's interesting that it's mostly females that suffer from ai diseases. It was explained that our chromosomes carry different sequences that predispose us to them. Also the hormones that protect babies & us from our immune system dwindle so the b cells and t cells attack us so exactly what you said more or less.
Heavens above! £250 is not too bad for a biopsy but 2k! Eeek! I've found 2 consultants for sfn, Jordi Serra at The London Clinic & Rob Hadden at Kings. Mr Hadden seems to do ivig & I will explore costs & criteria. I did ask my rheumatologist about biologics but she just said look at medical trials. I've heard Rutuximab (sp?) and Cellcept are beneficial & thanks for the trials info. I'm so sorry your sfn is severe now with no help available & you've had a horrible journey with everything. How was your Sjogrens diagnosed? Was it by a lip biopsy or eye test? You're dead right that alot of people have It but don't know it. My rheumatologist said this too & that it's only picked up if symptoms go crazy & bloods are done. Venus Williams was on The One Show speaking about how her AI disease (Sjogrens) affects her although she didn't stipulate what it is she has. Sorry to derail the thread somewhat but due to overlaps with fibromyalgia,lupus, ra, Sjogrens, eds, sfn, pots, CFS/ME etc it's good to share information that might help.

Dr Gupta (York Cardiology) is my cardiologist and he's incredible. It's a very long wait to see him on the NHS but if he's currently accepting private patients then I highly recommend him for anyone who suspects they have POTS. Definitely check things like supine to standing heart rate increase first so you have more information for him (and if you don't have an increase when doing this then POTS is not very likely but do make sure you do the test properly from resting to standing for 10 minutes to make sure).

I've had fibro for 15+ years. Things that have helped me;

1. Stretching every morning. Absolutely non negotiable. You have to be strict with yourself.
2. Slowly building up exercise as much as possible
3. Duloxetine. It's a antidepressant that is prescribed for fibro.

Now I rarely have flares, unless I've done something odd like been on a plane or some other "held in a different position" activity.

I take an Nsaid occasionally but no permanent pain relief. And I used to be on fentanyl patch max strength so I've come a long way.

I agree there is probably something autoimmune to it. I tested negative for lupus but the way in which the flares act is like a histamine reaction. I sent my bloods to Uni Liverpool testing but never heard back.

I doubt it's morphine. I'm one of these people who finds medications don't make me drowsy. I can drive fine on a cocktail of drugs that would have sent some people immediately to sleep.

My life is easier on painkillers. I can keep my activity levels a lot higher than I would without them. Without them, I can be trapped in bed for very long periods of time, which is miserable.

I'm seeing the rheumatologist next week so I'll see what his opinion is on those. Thank you so much.

Thankyou this is exactly why I posted lots of ideas from lovely ladies who get it that aren't the usual have you tried this vitamin or this therapy.

I haven't read the whole thread yet but couldn't help but post.

I have just been diagnosed with fibro by my GP, ive requested a rheumatology referral several times over the years and finally my new GP agreed (probably just to shut me up) only for them to reject the referral saying there is nothing to suggest it's required and to just treat as fibro! I've had no physical examination, no tests aside from very basic bloods. I have severe pain and fatigue that is so debilitating as well as other symptoms that fit an autoimmune condition. My mum died of Lupus 23 years ago and she also suffered from other autoimmune conditions so I'm fully aware of the symptoms.

I'm not convinced that I have fibro at all but all I'm being offered now is the pain clinic and Amitriptyline in the mean time. I'm trying to read up on fibro as much as possible so this thread is definitely informative.

@ever Can you share your symptoms and which basic bloods you have had done please?

Pain in most joints (not necessarilyall at the same time), most severely in knees, fingers and wrists and always symmetrical (both knees at the same time). These joins are also prone to swelling.
One knee has started locking and often feels as though it's going to give way.

Debilitating fatigue
Headaches
Dry eyes
Sensitive to sunlight
IBD type issues
Dizziness
Excessive sweating

I've FBC, C reactive protein, B12, folate, vit D, ferritin and TSH.
Ferritin is always low despite taking supplements.
CRP ranges from 4.7 - 9.5

Your GP hasn't really run many tests have they! You're CRP is a little on the elevated side but not majorly high & presume your vitamins were all ok? I would try to get ana, rheumatoid factor, anti CCP, dsdna, ESR. SS Ro and SS La. Also hba127 ( I think it is)for ankylosing spondylitis & coeliac gluten tests. These will at least give some indication if you could have a rheumatoid/connective tissue disease, ie rheumatoid arthritis, lupus, Sjogrens although a certain percentage of people have them but are seronegative just to complicate life! Pinch your finger joints above the knuckle, do these hurt? Do you have psoriasis? There is also a post infection reactive arthritis. From what I read the tests for thyroid issues in the UK aren't in depth enough, you may want to check on health forums regards. more extensive testing. You could have long COVID or maybe pots/orthostasis or dysautonomia. There's lots of overlaps with these conditions and the 7 people I know with RA all present differently. Of course fibromyalgia can't be ruled in until the other stuff has all been ruled out. Autoimmune diseases can be hard to diagnose. You can pay for tests privately, I found 2 clinics in London that are alot cheaper than the usual suspects for bloods. I can message you the name if you are interested. Good luck.

I'm so sorry for what you're going through OP.

I recommend Dan Buglio's page on youtube, called Pain Free You. He has a wealth of free information. It's probably best to go to his Fast Start page on his playlist where he explains Perceived Danger Pain.

Best of luck x

Does anyone take magnesium? I'm finding that magnesium malate in the morning after breakfast and magnesium glycinate after last main meal (else it has a laxative effect ) helps, although it knocks me out at night and I get dehydrated if I don't drink enough water afterwards. Mine stems from tight muscles/little gritty knots in the muscle which I manage/improve with massage and ice. It's like my body isn't recovering properly post exertion, even just for every day things and the muscles are locking up and not processing their waste products like lactic acid. The magnesium helps with the muscle recovery.

Yes, I take magnesium every night. It really helps me sleep. It also helps get rid of any antsy type feelings in my limbs.

I can very much relate to what you're saying about recovery time. Something relatively minor can send me to my bed for the rest of the day.

I've just seen the rheumatologist. Not very helpful at all. Wasn't interested in discussing my condition at all. He just wanted to give me a prescription and send me off!

@CherryRipe1 yes that would be great! I'm at the point where I clearly am going to have to look into paying private despite really not being able to afford it.

Ive been taking Magnesium for a few months now, its helped my sleep but not much else.

Have pmd you 😊

Update on medical cannabis as said I'd revert. Been accepted and got my prescription delivered very quickly! Now need to get a vaporizer and see how I go on it. It's supposed to help with fibro, muscular skeletal conditions, neuropathy, MS, epilepsy & other conditions.