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.

Turmeric supplement has made a significant reduction in my pain levels. Get high quality stuff. I use Nutrition Geeks for my supplements. I also take Lions Mane from the same company to help with fibro fog. I do yoga when I can,sometimes I dont have the energy but it has helped with strength and flexibility.

Oh wow! I really hope it works for you. I'm very hopeful for you.

Do you mind if I ask how much it was roughly to arrange everything?

Thanks! If you check out medbud it gives comprehensive lists of the 58 ish clinics, pharmacies and strains available, flowers or oils etc It's a bit mind boggling & big price differences. I chose Integro as it gives special rates for pip claimants on some strains and a free initial GP consultation. Also they seem to have a good rep. I pay £120 pm for 20g plus £8 postage as from next month. . I think mine is a fairly conservative dosage as I want to see how I go. Some people pay much more. There are other clinics that give reduced rates for certain benefits and veterans. Different clinics charge different obligatory check up and prescription fees & you can change clinics as far as I'm aware. Check out threads on here and Reddit for more info as I'm pretty new to it all. A summary of care will be required from your GP and I think heart conditions or history of psychosis might exclude prescribing of medical cannabis.

I tried medical cannabis for three months. It wasn't for me but happy to answer any questions

Thank you so much for the detailed explanation. I appreciate you taking the time with that.

It is more than I would spend now on it. I spend around £50 every six to nine weeks, although that wouldn't be enough to have it every day. I'm not sure I'd want it every single day though.

Thank you. It's just the expense for me at the moment.

No problem😊. Tbh I have a feeling I might have left overs ie too much & will see if I can have less if that's the case. . I tried it for the first time today using partners vaporizer as I was having a bad morning, after having a good day yesterday. (Does anyone else's fibro fluctuate)? It's very different to black market which I can't smoke. No coughing or dry throat. I think I had 0.14 of a gram which might have been a little too much but hey ho. Pain very diminished throughout the day including my clicky arthritis hip and just going to have a much smaller amount now. I was mildly stoned (& hungry lol) but managed to do housework and did some decluttering. I appreciate it doesn't work for everyone sadly, but does help alot of people.

Oh my God you've just described me. I had to be helped back to a hospital waiting room as at an appointment I just stood up and went really dizzy. I hate it

Yeah I've gone over or nearly gone over in waiting rooms and queues when I can't get a seat. If it's hot in there especially.

It's been happening for so long, I can feel it coming a mile off now though. I rarely actually go over these days.

Oh no, sorry to hear that, it's a bit scary isn't it. The self management of it consists of more salt and water, electrolytes, compression garments and squeezy exercises. There are drugs for it too. Have a look at the POts UK we site. It gives more info and also check out poor man's tilt table test. Cardio usually dx this.

Hi everyone. Hope you're all okay this weekend. I had some CBD cream on me yesterday afternoon and it does help take the edge off. However, yesterday I also shared a bottle of wine with a relative last night and it made the pain vanish. I don't ever drink usually but something in me said just have some, and it really sorted me out. Pain free today but just a bit groggy and can feel my body wanting to sit down. But I was thinking if I could drink one evening a week and do some exercises whilst the pain isn't there, it would help strengthen me as I'm usually in too much pain to do the strengthening exercises. Anyway, I guess it is a drug and all drugs have side effects so it's about having it in moderation.

Oh this is awful. I have been there. Even though not a popular opinion once I got on the right combination of medication i.e morphine, pregabalin and paracetamol s. Of course this works for me but everyone's different of course. Please keep on at your doctor, quite rightly they'll be reluctant to put you on strong meds but it honestly saved me It totally controlled me.

Deep heat funnily enough has really helped me settle and get back to sleep rather than taking extra pain killers.

Please don't try and endure it sounds so awful.

I'm not going to bother asking you whether you've had scans etc as you will be trying everything to feel better.

Every person I know with fibromyalgia has some sort of autoimmune disease such as coeliac disease, hasimotos, diabetes. I wouldn’t be surprised if there’s an autoimmune link.

You ask about what worked for others with fibromyalgia, so I’m going to share my experience.

About 20 years ago I was diagnosed with fibromyalgia by a rheumatologist in our main teaching hospital after years of pain etc.

Not long after finally getting a diagnosis, on Christmas Eve I was in church and prayer was being offered for healing. I felt a strong inner ‘push’ to go up. When I was being prayed for my hands and feet became very painful and I literally could feel pain ‘dripping out’ of my fingers and my toes. It was extremely painful and I made quite a racket as I shouted out with the pain. Afterwards I went home and felt that ‘something’ had definitely shifted.

Within two days I was bounding up the stairs two at a time, whereas before I could barely shuffle up them and slept downstairs, used the downstairs loo etc. I was running around without any discomfort at all. The pain had gone and hasn’t come back, even all these years later.

I sympathise, I have EDS, no cure or treatment and will have it for life. I hope things improve for you.

Same. And have developed POTS, which is treatable but not curable. I also strongly suspect autoimmune involvement with a lot of these conditions.

Daniela Dressen
This is exactly my thoughts it can't be a coincidence can it. Another poster spoke about her pots diagnosis, there are a lot of symptoms similar to mine so it's back to the doctor for me to discuss. I'm pleased I started this thread. There's so many people struggling with this awful illness. I hope things get better for you.

I have fibromyalgia, let me preface with that

With all due respect, my understanding of fibromyalgia is that your pain doesn't get worse, unless you're having a flare up - it's a chronic condition, yes, but not a progressive one

If your pain is becoming worse, there has maybe been a misdiagnosis or something else at play here

Yes I have POTS as well and there is some medical talk now about EDS having an autoimmune connection. I think autoimmune conditions aren’t well understood. Sadly they run through my entire family like water.

I remember going with my dad to Addenbrooks to see a consultant about his as then undiagnosed mystery autoimmune condition and the top consultant said something like “20 years ago we only knew of a handful of autoimmune conditions, now we know about 80, but there’s quite probably a couple of hundred or more”.

Dd has EDS, coeliac disease, POTS, fibromyalgia, some mystery clotting disorder, they’re querying lupus.

I had a lot of fibro symptoms during perimenopause and thought HRT would help. It didn’t. With a little research I realised that longterm use of antacids (lansoprazole) were interfering with absorption of B12 and magnesium. After six months of supplements the difference was incredible.
I take Anastrazole post breast cancer, a hormone blocker , which causes much joint and muscle pain so take an antihistamine daily and also a diuretic to reduce the fluid retention in my joints. I rattle a bit but can function so much better.
I’m afraid I don’t subscribe to fibro as a stand alone condition but just one of s group of symptoms associated with inflammation as a result of mineral and vitamin deficiency. It’s not just diet that leads to the problem but other conditions that disrupt our ability to absorb sufficient nutrient. That and the fact I am getting old. We no longer acknowledge aging as a cause of aches and pains.

My flare ups get like that. I have to be careful not to get in too much pain, because I'll start having a shock type reaction. I'll start shaking and won't be able to talk. It really is excruciating as well because then my whole body locks up and aches.

I wonder if you've tried or would try cannabis? It's really good for unlocking that flare up type feeling. I swear by it for easing one off.