Fibromyalgia - be honest.

[Hellovation]

I think I’m going to be diagnosed with fibromyalgia.

I had never heard of it, until the neurologist and GP both mentioned it.

Having now mentioned this to a few people and their reaction leaving me confused, some internet searches lead me to believe it is widely believed to be a non diagnosis and simply something in one’s head or a ‘lazy diagnosis’ because doctors are at a loss.

I was heartened to think I might have a diagnosis and understanding and way forward to get better and live my life but now I feel so sad.

Be absolutely honest- what do you think of fibromyalgia?

This means a lot.

The question is why are so many sufferers of FM resistant to the idea that it may have a mental health basis? Questioning this seems as naive as those those who don’t believe in it at all. Do you just want a label that has no societal stigma ?

I've read some of the replies and agree with the opinions, I do agree it manifests from trauma and this was said by my neurologist and rheumatologist. I was diagnosed with ME in 2015 and Fibromyalgia as a secondary condition along with Neuropathy, neuralgia and allodynia. The ME followed after a bad bout of shingles, they said the Fibro due to the trauma of my sister dying suddenly and a big operation 2 years later. Whether that's correct I don't know. What I do know is that my body is in constant pain, yep the symptoms can change hourly, or from morning to afternoon. Any stressful events, and i do mean high emotional situations will set off a flare. It's the worst pain I've ever experienced. I am still embarrassed to say I have Fibro, I do say I have ME but that's just as bad to people. No one will understand unless you have it yourself or a close relative or friend suffers. Long Covid has been great in highlighting the suffering of ME, it's disgusting how much research has been ploughed into LC when ME sufferers have been dismissed for decades. I wouldn't wish my days on anyone at all.

I'll go and read the rest of the replies now, x

Ps, edited to add i also went privately to obtain a diagnosis. I didn't want a label, I just wanted help how to manage what was happening to me. My GP at the time was horrible! She would say there's nothing wrong with you, you're depressed, you need to accept that! I changed practices and then again 2 years ago and i have fab doctors.

I know a number of people with fibromyalgia and without exception they all suffered from depression before the pain condition developed.

Im not sure I agree that it’s psychosomatic but I do think there is a link.

More recent understanding is that it’s linked to rheumatoid arthritis I believe.

I had significant issues with my back many years ago and the physio told me that “pushing through” pain is the absolute wrong thing to do. Pain receptors get more sensitive with practice so the more you push through pain the better your receptors get at sending the signals to your brain. And nobody needs super sensitive pain receptors 🙄

If you know for sure people are fleecing the system you have a moral obligation to report the facts.

My GP had hinted I probably have it due to excruciating pain flare ups in my body tha they cant pinpoint a reason for. I usually require morphine to get on top of the pain. However, I have so many other illnesses that I'm under primary and hospital treatment for, that getting a diagnosis seems a bit pointless when treating the symptoms will just be same.

Because it's easy to blame the horrible professionals who simultaneously order every test possible, signpost you to every source of support possible and try every pain relief possible but do 'nothing' at the same time. It's easier to dismiss treatment that requires the most personal commitment and doesn't have a quick or definite result. I don't say this resentfully it's human nature. Most of us would react the same way if we were in the same position

There was a very recent study that highlighted that disability payment fraud was so low that it could be statistically zero.

so someone who is (considered) disabled gets some enjoyment out of life. Is that so terrible? You don’t know what goes on when she’s not in the pub, you don’t know what she’s masking, you don’t know whether she would have liked to have worked.

I had a significant amount of time out of the workplace due to bringing up my family and my own ill health. I’ve been working full time now for 2 1/2 years. I’m permanently knackered but the personal satisfaction I get from having a meaningful job and being a contributing member of society is huge. Meaningful work, earning your own money is good for the soul.

I know someone with it, and prior to being diagnosed they were found to have a severe B12 and vitamin D deficiency. They still have regular B12 injections years on. From what I gather, the B12 deficiency might have caused nerve damage, and it sounds like this is linked. Their suffering is very real, I’ve seen it first hand.

I was diagnosed with Fibro whilst going through menopause, I honestly thought my symptoms were menopausal. I had little or no sleep and was in pain all the time, Dr was no help until I saw a new one and was having a review for my underactive thyroid, did explain was struggling with menopause and in a lot of pain, she asked where I got pain and she explained that she thought it might be one of two things and a blood test would rule it out, saw her a week later and she said it's Fibro, gave me amitriptyline to help me sleep, and wow the sleep was amazing, I have good days and bad days but a close relative who works for Socail Services states its not real, its all in my head. So if a professional thinks it's all in your head, what help will you get?

Cool story 🙄. Just because you apparently know people who have faked fibromyalgia to get benefits doesn’t mean fibromyalgia doesn’t exist.

Lots of people have faked cancer, either for themselves or their children, to garner sympathy, benefits, massive go-fund-me donations, “wish trips”, etc. Does this mean cancer doesn’t exist? Do you sneer at people with cancer and assume they are lying, just because people have lied about it in the past?

Fibromyalgia destroyed my life. I worked my arse off from the age of 14 in the hospitality industry, and by the time I was 23 I had a fantastic job with great career prospects. I took time out with my children and went back to work when my youngest was 3. I got my career back on track by working up to 70 hours a week and I was in the best shape and health. Ten years later I broke my ankle and had to take 3 months off work. I tried to go back but the pain in my leg developed into all over pain and many other symptoms. I was signed off sick for another 3 months to try and get to the bottom of it. The eventual diagnosis, via a winding path of psoriatic arthritis, MS, inflammatory arthritis, lupus, or osteopenia was fibromyalgia.

I can’t work, I can’t go on fancy holidays, I can’t afford my lashes and nails done and even if I could I’m in too much pain to sit for that long. I was earning a reasonable salary (it’ll never be that good in hospitality) and my benefits that you all so desperately object to total less than a third of what I’d be earning by now. There’s no way I could support myself on what I get, so not only is my husband expected to be my unpaid carer, he also has to work full time to keep us both. Not really a situation I was envisioning in my 50s.

I have noticed that everyone I’ve met with this diagnosis has a history of trauma, and I think that needs to be considered as part of a healing approach for patients rather than just focusing on the physical symptoms

I quite agree with this, I've recently been diagnosed with significant B12, Folate and D deficiency. Few GP's are clued up on how serious B12 deficiency is. It can lead to permanent neurological damage.

My level was so low the specialist was really shocked. He said, you must have been feeling awful, which I have. He reall ly understands how bad it is.
All the NHS will offer is 12 weekly Injections when twice weekly are required, for life.

Yes but it’s not always psychological or mental trauma. Mine was believed to be brought on by physical trauma, and my mental health issues are caused by fibromyalgia not the other way round.

I would urge anyone suffering unexplained pain and neurological symptoms, ask for a B12 , full iron, folate and D blood test. My issues are malabsortion and I'm undergoing further private blood tests to work out the cause as frankly the NHS is just not up to speed. I truly believe many people with Fibro are actually B12 deficient.

Yes, I agree. The person I know moved abroad and they get much more regular B12 injections than they were being offered over here.

Also, in relation to people who have been told their levels are normal, I would ask for actual numbers. I had a ferritin deficiency last year; my level went down to 10 which is very low and I was prescribed high dose supplements. They retested after 3 months, my level came back at 23 and I was told that as this was now normal I wouldn’t be prescribed any more. 23 is not a normal level for a mid 40s woman! Off the record I was advised to buy supplements to keep taking and told that the NHS threshold is very low.

There is a lot more information these days about autoimmune conditions. It is a cascade effect of a hypervigilant immune system. Genes play a part in terms of susceptibility but what turns on the gene to become active varies. Some auto immune conditions are thought to start with leaky gut and signs can be seen in the blood several years before symptoms show. Other triggers can be viruses or stress. I really recommend the book The Autoimmune Fix by Tom O'Bryan. He also appears on lots of podcasts and YouTube videos for more information.

To add to my previous post, my BMI has always been in perfect range, I'm higher educated and was diagnosed in my early 30s, so I don't fit the stereotype some people have stuck in their heads.
I agree with other PP's that people get regular blood tests and get a print out of the numbers to research the correct levels as usually you'll be told results are ok when they're not. I self inject with b12 I buy from Germany as the NHS really has no clue on how to manage it. It doesn't clear up my symptoms but keeps the neuro problems from becoming worse.
I eat clean, avoid alcohol and try to take cofactors for my vitamin issues.
Interestingly, as another PP mentioned, I've also recently been diagnosed with hypermobility. Stomach related issues run in my family, and my children have sadly picked some of them up too. Be careful of taking PPI drugs for stomach problems as they can deplete vitamins and make things worse.
Research the hell out of everything as we get diagnosed and left to it, then every issue we have is down to fibromyalgia as we can't possibly be suffering from anything else. Fight for your health even though that's exhausting and adds to the mental load. Don't let the unbelievers get to you.
I'd list all my symptoms, but I'd be here all day and my hands are hurting and tingling from just typing this out.

Absolutely this! If I was imagining anything for myself, it would be to be able bodied with the energy to achieve all my wants and wishes!

The only person I know who has it (I believe self diagnosed) definitely has some mental issues.

She found a reason to leave uni, leave every job she had. She homeschooled her children. The moment they went to school/college she felt pressured to get a job, within weeks she declared she had fibromyalgia and quit.
Theres clearly something going on with her. Her fibromyalgia doesn’t stop her social life or going on holiday, just working, or leaving the house when she doesn’t want to. She regularly posts things about ‘spoons’ and managing her energy.

The issue for her now is she is clinging to this idea that’s what she has and she now won’t ever probably get to the bottom of whatever her real issue is.

I think you’ve hit the nail on the head there.

Similar to me, although I didn’t have a career as such. I was previously a single parent and my circumstances meant I worked at what could pay the bills. I was, however, quite lucky that I mostly enjoyed what I did. I went through a period of not particularly enjoying call centre work after leaving a job I loved but then I moved to a good department there and loved it and it was decently paid.

I’ve said before I worked 2 paper rounds at 13. Then I added to that a Saturday job at 14 (they weren’t so strict back then). And I worked right up until I couldn’t anymore. I was an energetic, single parent for a few years until I met DH. We had 2 further children and I continued working. Life was amazing. I then started having symptoms that continued to get worse and worse. Long (investigative), story short, I’m now too ill too work. I’ve tried all of the things I’m supposed to. I’ve paid for therapy to help come to terms with it but the fact is, I’m now reliant on my husband to look after me and the feeling of being a burden (both financially and physically) will never, ever leave me.

I would give anything to get back to my old life again.

@octopusenergyfree50Focus on something else? How is that going to get me out of a wheelchair? How is that going to miraculously going to enable me to be able to sit up in bed when I’m bed bound?! Ableist nonsense

Please read my original post.

I said that Fibro gets a rough ride because so many people fake it and use it as a way to make a free living, however I have a friend who does suffer with it and she suffers badly. Her life is constantly affected and I completely believe that Fibromyalgia is real and can be debilitating.

Another poster said my claim about getting good benefits with Fibro was a unicorn, the post you have quoted was my reply to that.

Please don't read it out of context, I cannot stress enough how much I do know that this illness is real and cruel.

I said I think low opinion of it comes from those using it to get a free ride.

I have tried, as have many others. But the authorities don't have any interest in investigating our claims.