Fibromyalgia awareness day.

[vipersnest1]

I have posted a few times here about my fibromyalgia.
After my diagnosis, I was off sick for over eight months, but after a lot of physical and mental effort, I was able to return. I know that some people aren't that lucky, because their symptoms are so bad.
Today is National Fibromyalgia Awareness Day and I thought I'd make a thread about it because so many people still don't know about it, or misunderstand it, yet it affects 2% of the population of the UK.
I just wanted to put it out there and show my support for others in the same position.

Can I ask what you found helped? Anything in particular treatment wise that worked?

Thank I for posting. I have fibro too and went back to work after a year off. Am waiting for another pain clinic appointment as pain seems to have worsened. It's good to find others who understand.

It's a long post - sorry! I wanted to give as full a reply as I can.
I'm currently taking 50mg amytriptyline at night so I can sleep. I also take 3 x 100mg gabapentin to help with nerve pain / weird sensations in my legs (other causes ruled out by MRI, and I went up to 3 x 300mg which didn't help and made me feel horrible).
I also take methocarbamol (to replace baclofen as it stopped working) to help with the tight muscles in the backs of my legs (and hopefully my lumbar spine).
I use a TENS machine when my back pain is bad - it's a game changer and also distracts if I'm getting weird sensations from my legs.
I have arthritis too, and found an osteomyologist very helpful to get me back on my feet (I'm lucky in that I could afford to pay privately although I'm not rolling in the lolly.) I got exercises that helped me to regain strength and stamina and massively reduce my back pain, although it's still awful.
I currently take nefopam to help with breakthrough pain (ideally I take meptid, but that is out of stock at the moment - I'll be glad to get it back as nefopam makes me feel a bit 'off my face'). I also have cocodamol, but I already have gut issues so I only take it if I'm desperate or I can't afford to be a bit 'not with it' due to nefopam (i.e. at work and not due to drive soon).
I'm taking 20mg citalopram. I've taken this dose in the past and I know it helps. I asked my GP for it when I was struggling to cope with my diagnosis, plus at the time I was involved in a struggle with my work's OH doctor who wouldn't recognise my diagnosis and clearly had no idea of the impact on me. At one point it was suggested that I should consider medical retirement as I'd been off for so long (very helpful - not). I also lost my DM earlier this year, so I'm waiting until I'm more settled in myself to decide if I can think about tapering off it.
I work full time and have a stressful job. My DCs are grown and have left home, so I am able to come home and nap if I need to. At the weekends I spend a lot of time catching up on rest (spoons and all that!)
To be totally honest, if I'd been in this situation twenty years ago and dealing with DCs, I know I wouldn't have been able to work full time - it's hard for me now.
Looking back, I've had fibromyalgia for a long time (and have been fobbed off by so many doctors and rheumatologists) but what brought it to the fore was what I believe now to be a huge flare.
@biehrvduevr and @Thermals, I'm sorry for you that you find yourselves in this position too.

I also think I’ve had this for years. I’m on the 3x300 of gabapentin but weaning off slowly to see what dose works best with fewest side effects. I don’t work.
I have started taking magnesium supplements that really help with the cramping. I sometimes take CBD at night. I’m doing a mindfulness course and I’ve found that really helpful. (Referred by pain management.) I also took up open water swimming and it’s ace for the pain.

I have had it for 14 years now. We need much more awareness of what an awful illness it is.

What works best for me is pacing, it took me a long time to get a good idea of what my threshold of activity is without causing a major flare.

I take amitriptyline for nerve pain. I also have a prescription for medical cannabis through a private clinic. I take this in oil form and it helps me through the bad pain days more than most medications do.

I have many bad days where I am invisible, bed ridden mostly. I also have good days where people will see me walking and smiling. What they don't know is often the one good day is followed by several bad days. I vary from being able to walk slowly but unaided, to wheelchair bound. What's always invisible is my pain, it's constant. Some days even brushing my hair can cause pain.

It's also very unpredictable, I can flare up sometimes for no reason I can fathom.

I have read all the literature on it, tried every bit of advice, from yoga, to diet, to meditation etc. I have tried all medications known to help at least a few times in desperation (with the exception of LDN). I have been tested for coeliac, all forms of arthritis, MS etc etc.

It took me years to accept this is my life now. It could be worse at least it's not very progressive.

Thank you for this thread. I was diagnosed privately in 2017 with Fibromyalgia, ME and Allodynia. I also have osteoarthritis. I was prescribed Duloxetine initially and it did help with the pain, it made my MH take a nose dive and I honestly thought I was losing it mentally. Last May I had a major flare and an ME crash at the same time. It was the worst yet and its taken a year to get some normality and mobility back. I tapered off Duloxetine in November 2022, my GP put me on Sertraline and it's been the best thing for my MH. The pain is now horrific at times. I can't move my arms or use my hands with the pain, my skin is suffering with sensitivity and bruising like feeling. My mobility has taken a huge step back again. I have tried pregabalin and the other one lol 😆 sorry fog head!
I'm on Naproxen twice a day, co codamol 30/500 and tramadol both of them 2 x 4 times a day. I've never heard of nefopam, I'm in the process of changing our GP practice and I'm hoping to get a GP with more patience who will listen instead of dumping opioids on me.
Hugs to you all. Its debilitating and frustrating. I hardly tell anyone in RL I have it now, it's too hard to explain the whys and hows and all the additional secondary illnesses that come with fibro and ME.
Xx

I have fibro and CFS. I always say I could cope with one if I didn’t have the other. Not found any medication has helped and GPs put me in hospital twice telling me to take incorrect doses so my faith in drs took a nosedive.
Tens machine is the best thing ever invented.
I eat next to no processed food & limit gluten though not gluten free ( too difficult, too expensive) Take large doses of vitamins and discovering B1 was a game changer and got me walking again.
I don’t know how anyone works when they have fibro, I take my hat off to you. I was lucky in that it really kicked in after I retired early, though some of the pains , especially the costochondritis, I remember from childhood.
I’ve just been accepted onto a medical study for CFS which I believe is looking for DNA link.

Meant to ask, does anyone think there’s a link between Fibro and glandular fever?

It's interesting to hear what medication people are on. I hadn't thought of a Tens machine. Yes, working is just about manageable as I can work from home. I do very little else though. I haven't heard of a link with glandular fever before. Do you ever doubt your diagnosis? I'm convinced it's something else. They won't let you see a rheumatologist in my area for fibromyalgia. I am thinking of trying privately.

Thank you for all of the replies! Too many for my fibro head to remember- it's really affected my short term memory.
@Thermals, it's interesting that you say that - I've always said that my symptoms were connected. It was my GP that diagnosed me - that's appropriate where I live, as long as the GP was sure of it.
I had glandular fever at age 16. I was really unwell and it took two weeks before my DM accepted that I was ill! I was supposed to be able to take part days and then go home, but that wasn't doable as I went in by school bus and my DM and DF both worked so weren't around to take me home....
The rheumatologists that I saw as an adult all discounted me saying my symptoms are connected, even down to my skin flaring up when things (my joints and pain etc) are bad. That's happening now - I have some joints in my hands where my pain is through the roof, let alone my ongoing back pain. My left knee is joining in, and I have a (typical for me) pattern of my skin peeling on my index fingers.
I've had some awful moments when I fell asleep for a few seconds when I was on 3 x 300mg of gabapentin - it really doesn't suit me on a higher dose than 3 x 100mg a day. I went on holiday last year and nearly drowned as I passed out while swimming. Thank God that's all over now.
That's all I can manage for now - it's been a long week!
I'll come back tomorrow. Hugs (gentle ones) to everyone that has posted.

It’s an awful disease that everyone thinks is made up, probably until they get it. I wouldn’t wish this pain on anyone!

Interesting @vipersnest1 I had glandular fever as a teen too.