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.

Bump

Sorry you're having to deal with this, I've had Fibromyalgia for many years. The best treatment I have ever managed for myself was psychotherapy, it helped me come off all the pain relief. The last study I read suggested its your body over reacting to stimulus and the pain receptors are over reactive, the suggested treatment as with all pain is becoming knowledgeable about your condition and reconditioning your thinking about it. Telling yourself you're not going to come to any harm from this pain and you can keep going a bit longer. It's counterintuitive and contrary to a lot of fibromyalgia advice out there but it's kept me in work and independent so I think there's merit to it.

Thanks for responding Fibro I'll look into psychotherapy. It's one of the few things I've not tried so worth looking into. Can I ask what sort of job you do and do you ever get Fibro fog or are your symptoms more pain related?

Gosh you poor thing.
Have you ever tried yoga? I'm not suggesting it's a miracle cure or anything but I used to teach yoga and I taught a couple of people with fibromyalgia long term, and they did find it helpful as part of a package of self care.
If you haven't tried it and it appeals I would recommend looking for a qualified Iyengar teacher and having a conversation with them about your illness before you start rather than just turning up. Iyengar is good at modifying postures to suit people's needs and limitations. It's definitely good at changing your relationship to chronic pain.
I hope things get better for you.

The memory problems will be caused primarily by the morphine and any other pain relief medications you are taking. They will be causing a lot of the fatigue and reducing your ability to concentrate and pay attention, hence the memory issues.

I’ve read that fibromyalgia is caused by psychological burnout. When someone feels emotional distress it’s the same neural pathways that are affected as with physical pain.

Maybe try to be open minded and do the pain management course. You will receive support and learn coping strategies that will spring board you into recovery. Your confidence will improve, pain reduce and concentration levels will increase.

I hope you can make it to the pain group.

I was able to go to a really good pain group but to be quite frank they didn’t teach me anything I didn’t know.
The one thing it did do was enable me to make a really, really good friend. We understand each other without having to explain.
It was really strange because we had a talk from a really, really eminent pain doctor. He basically said - take less drugs, they become ineffective. So you can imagine how well that went down!
I then went to a consultant appointment a few weeks later for endometriosis and the consultant said he felt I could benefit from increasing my level of pregabelin which I’d really decreased. He did say he’d consulted with the clinic’s pain expert and he agreed - up your dose.
It was the same flipping expert who had told us to reduce our meds in the pain group - the irony!
I am very interested in the studies.
What I don’t want is anyone else telling me to try yoga, reiki, acupuncture. It is all very nice but isn’t that effective.
I do agree with PP about psychotherapy.
I do believe that it’s an auto immune disease.
I don’t take morphine or any opiates and suffer with the same memory issues. Mine started in peri menopause!

I do believe fibromyalgia exists but I think it is very probably mistakenly diagnosed when someone actually has an auto immune disease.

My rheumatologist thinks I have fibromyalgia but I'm not convinced. He poked me in the arm, asked if it hurt, to which I said err maybe a bit (since he poked me quite hard), and that was enough for him to diagnose me!

I have psoriatic arthritis and personally, I think that's what my pain is from. I really don't think my brain is imagining I'm in pain. I was referred to the pain clinic a long time ago, but they haven't even given me an appointment. I can't see it being useful anyway. I don't believe that a positive mental attitude is enough to get through excruciating pain.

I'm also on strong painkillers and I have no intention of stopping. Like you, I'd have no quality of life without them. I'd actually be looking to book myself into a Swiss clinic if someone decided I shouldn't be allowed painkillers. I used to do advanced yoga and a lot of meditation. Yeah, it's not useless to have those skills, but you can't om your way out of severe pain.

I was diagnosed with fibromyalgia in February this year, I've had symptoms for about 7 years and believe it's linked to peri menopause in my case. I have a telephone appointment every 6 weeks with the pain management clinic, they insist that I can cope without pain killers which I've done up til now but after a particularly rough few weeks I've been prescribed amitriptyline by my GP. I've not taken them yet as I feel like a failure for "giving in" yet sat here in tears because of the pain. Oh and brain fog is real, I feel like an absolute idiot sometimes trying to think of words half way through a sentence and mine definitely isn't due to medication as I don't take any!(yet)

The body says no
The body keeps score

These type of books were helpful for me. I also did the curable app and do a lot of nervous system work. I personally think it's a mindbody disorder but it's very complex to reprogramme.

I have suffered with fibro for over 10 years, as much as people 🙄 at me the best thing I did was clean up my diet, cut the upfs, seed oils etc and really focused on gut health. I started exercising (slowly!) and I haven't had a flare in over 18 months now

I have centralised pain syndrome which, I was told, is the same as fibromyalgia symptom wise, but fibro is an autoimmune condition and CPS is caused by the brain sending out alarms for no reason and deciding there is pain. CPS is also on one side of the body, not all over.

For me my symptoms eased- brain fog, concentration, fatigue etc when I came off the morphine and went back to work. Been back in work 5 years and have only had several bad flare ups, but ones I can deal with now. Before I would have been bed ridden. But that's just my story. Everyone's different.

The morphine will be causing most of your issues.

Try reading "the body pays the price" and see if anything in that resonates with you. I've seen a lot of information that says it's not "real" pain but rather your body perceiving/interpreting the signals as pain. I would strongly recommend guided meditations to help with over coming pain , petite that really learn the practice Orient can literally turn pain off and people have been operated on without anaesthetic and not felt a thing. Maybe even EMDR therapy to deal with any latent psychological trauma as they really do affect the body as much, if not more, than just the mental health aspect. Also, do a search on here for psilocybin therapy and consider it going forward. It can help with acceptance of things that are beyond us and it's really helped me make peace with my auto immune diseases and mental health struggles. It was more effective than ask the bipolar medication and anti depressants I've ever had combined. I've been able to avert my life and my body with all its flaws and I'm happy despite them.

Sorry that should have been the body keeps the score, ironically, I'm having a flare up at the moment and my brain is mush 😂

Great books!

I would second the recommendation for psychotherapy. Chronic pain is reliably associated with trauma. I don't know if that applies to you. There is a growing awareness that trauma causes a much wider range of manifestations that just classical or even complex PTSD.

There might be suitable therapy available via the pain clinic or IAPT services which are usually self referral have therapy for people with chronic physical pain in many areas. It might take a few tries to get the right thing as there is a stepped care model. I would recommend not giving up if step 1 doesn't work and asking what else is available but usually you can't just go straight to step 2.

In some places there may be compassion focused therapy (CFT) or acceptance and commitment therapy (ACT) available on the NHS

I'm 66 and was diagnosed with Fibromyalgia age 40.
I had many many tests with a Rheumatologist and other professionals.
I was put on morphine but it caused other severe medical problems and l became allergic to it.
I now cannot take any opiates including codeine ( tramadol etc).
Only pain meds l can take is paracetamol.
I did some research and spoke with experts.
Vitamin B12 was my answer.. not the NICE guidelines.. because they are set too low.
For last 6 years l SI B12 once a week ( buy from Germany at a cost of only £1 per ampule dose).
It sure is a miracle.
There is a huge link between Fibromyalgia and B12.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9352804/

Can you say where you order from? I have terrible trouble getting my levels up and the GP will not take me seriously.

You need the needles too.
Plus an ampule breaker ( the purple thing in my box)
Maybe join a B12 group on FB?
See pics.

Thanks! I don't do Facebook but I'll get my partner to join one of the groups for me.

Not tried yoga unfortunately finances are not great at the moment with me not working however I found a lady on YouTube who does pilates specifically for people with fibromyalgia which I need to get onto, as it taught me how to breath through stretching and was really gentle.

Incidentally I watched a programme which had Malcolm Ballantyne in it. He said he'd had an accident which left him with severe back pain. He tried all sorts of treatments which were no good until he started doing yoga which really works for him.

Hi Cherry lips thanks for replying. Not sure the morphine is fully to blame although it does come with a lot of side affects as does the other medication I am taking. I'm terrified of coming off the medication as I have tried everything else medication wise. I still remember the pain I used to be in how it made you just not see the point of getting up in the morning. As your just facing more pain. I was seriously thinking about ending things and luckily as a last resort my GP put me on Morphine and it worked. It's not just the morphine though it's the combination of all my medications which give me pain relief.

That's why I'm so interested in this new studys findings as if it is an immune disorder and pain signals wrongly being sent ,this will open up so many treatment options. Giving me an alternative to being in pain.

Peggy you sound like we're in the same boat and yeah I've been told to take Chinese medicine have acupuncture. Everyone thinks they can cure me easily but very few live with chronic pain so can never understand.

Will be trying some vitamin B12 me think

Old tin hat - weird that you were told by a specialist Fibro is an immune disorder as the study is on its infancy. Was this recently that you were told this. Maybe specialist are coming around to the idea.