I’ve just been officially diagnosed with fibromyalgia even though my symptoms started 10 years ago. I’ve spent so much money on trying to get rid of pain especially in the shoulders and middle of the back but doctors just handed out painkillers, I then suffered different side effects with them and in the end you just give up thinking it’s all in your head and you try and manage the pain with yoga and Pilates but then I used to get more pain. Luckily at the end of last year a new doctor arrived and said you need to be going to rhumetology at the hospital. January I finally got diagnosed, what a relief in a way as I wasn’t going mad. But then you get that diagnosis and that’s it. I then started to try and learn everything why I was feeling so much pain and what could I do to help myself, you are given a leaflet and told you would get a physio appt. I learnt more from an American doctor who had fibromyalgia so I really recommend her book The Fibro Manual by Ginevra Liptan MD, yes a lot of it is American based but I’m in the beginning of a new diet regime so watch this space and I’ll let you know how I get on. One interesting thing she said is your body reacts like a cat in flight mode but unlike a cat our body doesn’t relax
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Labradoodlelove
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Hi and welcome to our community. Like you, it took many years for a diagnosis - from 1987 to 2014 to be precise. Again like you, I cannot tolerate the prescription drugs. I rely on diet (no processed foods and no refined sugars), chiropractor and hynotherapy treatments and the usual epsom salt baths, heat pads, biofreeze gel and gentle exercise. Hydrotherapy may also be worth a try.
You may find a referral to a pain clinic or one of the many fibro clinics dotted around the country could be of help. I attended the Guys and St Thomas's fibro clinic. Saw several different specialists there, the appointment lasted several hours seeing a rheumatologist, physio, psychotherapist etc and they then put together a plan of action to send to my GP. It was amazing to feel that at long last I had found a place where my symptoms and feelings were validated.
Wow you are so lucky. Unfortunately here we don’t get the same treatment, I did attend a pain clinic in Norwich and what a waste of time my driving to it. They get you to fill out a form in the waiting room, from 1-10 what is your level of pain and then stupid questions after that which did not relate to my condition, you then had 15 mins with a practitioner going through those questions! Physio was a joke as well another questionnaire then a printout of exercises for you to do! I can’t tell you how much money on Chiro’s and personal trainers I’ve spent over the years. Well I’m hoping this anti inflammatory diet works, again something I’ve done myself. It’s so great to finally talk to people who understands how painful this condition is
I've got to admit I never had any joy with the local pain clinic, so much so the rather nasty woman consultant claimed she didnt think I had Fibro, she was just miffed because nothing she tried worked.
How I held my tongue I dont know. First off I saw Rheumatologist who diagnosed both Fibro and Ehlers Danlos before I saw her, and secondly trying to treat body wide pain by sticking steroid injections in bits of me piece meal, its a no brainer its going to do diddly squat.
The only way that was going to work is if they given it to me by iv lol. I felt her so called approach rather proved it was a whole body issue rather than just this and that bit hurting. They also tried me on acupuncture which helped with relaxation but not with pain.
I dont take any NHS Fibro meds, found them either ineffective or they had bad side effects. I do get Low Dose Naltrexone, an off label treatment on private prescription, which works for me.
Other than that its the usual suspects, rest, pacing, healthy eating, exercise and getting a good night's sleep. Also good posture is important, so many of us suffer with poor posture, huddled over desks, straining our necks peering at screens, causing tension in our shoulders and back. This adds to stiffness, headache etc.
I never realised until recently how much I stick my head forward when looking down at my tablet. It places huge stress on the neck. I'm always correcting myself now. Text neck is a real phenomena, even got a cute name 🤣
It’s very frustrating when you try and explain how you are feeling as you can’t see pain, my shoulder pain gets so severe I feel sick, they took X-rays of my ankles hands and knees to tell me I have osteoarthritis but no X-ray of my shoulder 😤 I use a tens machine but I’m now on the highest level. I agree with you about iPads but I try to have a week of no social media. One thing I’ve found is a new love of crafts and it really helps to relax me. I’ve joined a group and learnt how to crochet and use a sewing machine for the first time, never too old to learn 🤣
In defence of pain clinics, the questions need to be generic. They see anyone with any type of long term pain. It seems to be luck of the draw as to whether or not you see someone with the relevant understanding of what fibro actually means to those of us with the condition. Obviously it didn't help you. Wasn't particularly helpful for me except that the pain killing injection into the back of my head did actually cure the migraines for many months although that was not what it was supposed to do, just a fortunate side effect.
I had to be very pro active and persistent to get a referral to the fibro clinic. My GP didn't want to do it so I wrote and requested the referral, this way the request forms part of your notes and doesn't get overlooked as a verbal request might. I followed it up with a telephone consult and another verbal request and it had the desired results. The physio at the fibro clinic did obviously undersand fibro and was helpful as my mobility isn't good.
My diet, although not anti-inflammatory, does work. I understood that fibro wasn't an inflammatory condition but hey if following the diet works it's a result, we all have to try and take control as the medics don't really know what to do with us. Fibro is different for all of us and what works for one may not work for another. Many find mindfulness and tai chi works but I've not had any success with either.
Good luck with your quest to find what works for you.
Hi there, You have the right idea to try to research for yourself. I know that a lot of Fibro pain is just misunderstood. There are techniques that can help, if you can figure what you are looking at. I recommend the Brad and Bob youtube videos. (other useful Physio vids are available). These people are capable of sorting pain I thought was permanent. The NHS Drs and Physios I consulted for years, could do nothing but hurt me more. It was very depressing.
I suspect our Fibro bodies are prone to tension and pain but there is help for at least some of it. You just have to do the reading and the work.
I think there is a lot Drs do not yet understand about the workings of our bodies. Sadly the way our Drs are kept busy, I doubt many have the time to think for themselves. Easier and safer to follow NICE guidelines.
So glad you got your diagnosis, but sorry at the same time. Let your body tell you what you need and try, if you can, to find a therapist who does myofascial release. I Googled this for you.
Myofascial release (MFR) is a therapy that aims to treat pain and immobility in the musculoskeletal system by relaxing contracted muscles and fascia1234. Fascia are connective tissues that surround and support muscles, bones, and organs. MFR applies gentle sustained pressure or tools, such as tennis balls or foam rollers, to stretch and release fascial adhesions and improve blood and lymphatic circulation12345. MFR can also stimulate the stretch reflex in muscles and promote relaxation25.
I did this myself and can thoroughly recommend it. My FM does not bother me much now. I have other things to contend with - multiple compression fractures, which, following a brief hospital stay this week, I found I might be able to get bone-strengthening injections that I had been previously unaware of and denied.
Thank you for your message, I have looked into that Myofascial release and yes there is someone who does that but not near to me. Unfortunately I just cannot afford the treatment as it would probably need a couple of sessions. I’ve been doing some stretching that I learnt in Pilates. Just get very frustrated as I love walking my two dogs but I struggle on the return back home as my legs turn into lead! It’s going to be an upward journey but I’m convinced I’ll get there
You are likely to need more than a couple of sessions but not ongoing, so if you can get some funding from somewhere that would help. It would also help if you would walk only half the distance you walk the dogs; that way you would have less leg-stress on the way home. There's no point in overdoing things. FM loves you to overdo things! You're right about stretching but Pilates can take you too far - just like your dogs. It's good to lie on the bed and stretch in different ways to see how it feels and do what your body idicates it needs.
Thank you so much for your reply I think it’s hard for me to stop my favourite walk as walking through woods is so calming and I’m a tad stubborn in given in to Fibro 🥴 and my two dogs could complain on the shortened walk 🤣 I understand what you mean about over stretching. Has anyone used weight training? It’s the shoulder pain that’s the killer
I don't think weights would help if you have pain. Heat would help and just stretching. Rotate your shoulders in any way that they would thank you, and take it from there. Yes, it's often not stated that people who have FM are the same people who always go the extra mile - walking dogs or house-keeping. Then we suffer for it the next day. You have to find the happy medium, but I would think dog walking would be really good exercise. Do the dogs pull on your shoulders? Can you stop them?😊
I like you had pain and discomfort for years, with strange rashes, swelling to joints, exhaustion etc etc from about 2003. I really believe mine was triggered by a terribly stressful, controlling first marriage. I saw so many Dr's, Consultants and chiropractors, steroid injections and meds, (most of which caused allergic reactions) even Acupuncture, over the years I'd given up! Stress makes me worse. Finally diagnosed with Fibro in 2014, then Severe Fibro 2015. GPs around here don't know enough about it. Why are there no Fibromyalgia Consultants? I have looked for drug trials, read papers online, mainly American, and am currently under a Rheumatology clinic. My Dr's have said not comfortable prescribing anything more than I have and will only send me to another Pain Clinic for which I've refused as in my experience are a waste of time. Offered CBT too, how is snapping an elastic band on wrist, everytime I am in pain going to help? 😳 I shall look for to hearing how your diet change goes and give it a try myself if it works!
Good Luck and welcome to this supportive community xx
thank you on the run. I’m so glad I found this website, I was getting mentally exhausted trying to find out what was wrong with me, continuous drs appointments with different doctors each time. I think even my husband thought I was making it up! It wasn’t until we got a new doctor who said I should have been refered to the hospital that I finally made sense of what I had been going through. Stress is a major factor I think and I’ve had plenty of that especially with my son who tried to take his own life, he was miles away and it was the biggest covid lockdown where we couldn’t travel so I had to make the decision of getting him committed into a mental unit. I hated doing it but it turned his life around, he still is not stable but he’s moved nearer to us. I bought a book called Fibro Manual and it’s written by an American doctor who has fibro herself at a critical time of her studying, she got no help and decided to be used as a Guinea pig to find successful treatments. Her name is Ginevra Liptan MD and it’s a very interesting read, although a lot is using American drugs. I had an awful night last night, too much walking yesterday so only myself to blame, but so frustrated as it’s the one thing I love. My legs felt like I had electric shocks going up and I struggled walking to the toilet, left ankle all swollen up again this morning! Honestly I really was so looking forward to my retirement and then this happened, what started off as just niggly aches and pains has resulted in the worst pain ever. Thank you to all who reads my comments and sorry it’s a manuscript but it’s more a relief to get things off your chest x
Sorry for late reply, stressed again with new pup! Even more sleep deprived! I retired at 60 last November, planned on pup for company but, we have pup from he'll atm😂I too have had stress with my Autistic daughter who did the same. It's just one thing after another. I printed out a list of all the symptoms and got my husband to read it. I have old injuries too which don't help. I take Pregablin for the nerve pain which does help. I have ordered the book off Amazon today! I shall look forward to reading it.
Oh now would that little pup be a cockerpoo? I’m lucky now as my two are 11 this year and are really chilled, hate to tell you they were 7 before they calmed down 🤣 I really hope you enjoy the book as I did get a lot of information from it and explained a lot of my symptoms. Good luck with the puppy x
No it's a Siberian Husky with blue eyes, looks adorable but can be a terror nd not settling with food nd tum atm😳I have taken printouts of all the Fibromyalgia symptoms to GP'S & Consultants only to be dismissed, or a glance nd an oh, before they hand it back. My Dr's has said don't know what to give you now, so go to pain clinic again! My records have Severe Fibromyalgia all over them, I have a BuTrans patch for old injuries, but want something to at least ease the muscle aches, swollen joints etc. Anything I can learn from this book would be gratefully received! Am now gna cry in corner over the calming down after 7yrs😂😂
Ontherun, oh my! Well I’m going to say good luck on the husky 🤣 getting food right is a nightmare we have brother and sister the girl is okay but the boy was horrendous, the vet put him on a special diet food which cost us a fortune so we fed them both on it but then I was recommended this fresh cooked food (this was only a few years back) which they love and it comes frozen so you take it out to defrost and a heck of a lot cheaper but every dog is different. The only reason I said cockerpoo is my son has a puppy and she’s a little she devil! I could talk about dogs all day 🤣 the thing is with doctors you cannot tell them what you have probably why it took me 10 years 🙄 the one thing I say has kicked in now was Nortriptyline so I’m getting a better nights sleep but it has taken over a month! You take 1-2 but I’m still on 2! Good luck with puppy training we get them in our forest doing sled runs, they are very noisy and communitive 🤣 they freak my two out but I think it’s the eyes as it took a while for them to get used to my other sons Marley Collie (one blue eye) have a lovely day x
Hello Labradoodlelove,(would I guess you love a certain dog? haha)
I think finally more people are getting the information which has been hiding away, I'm only speculating, but I recon the older GP will send you off for tests for this and that and as long as you are not asking questions or letting them know we think it's Fibro, they'll just telll you to take some painkillers, There is no cure and come back in a month to see if your ok??
My GP is a wonderful young woman that has bent over backwards to help us and knows so much about Fibro, The GP's that are older are just ticking off the time until their retirement,They've been in the job for so long they don't want or need to have to learn anymore, (That's just my opinion and I would love to know I'm wrong)
I was surprised to see the body pillows I was looking at on-line says ,Ideal for Fibro and sciatica, Well deal me in, All though where I'd put it when not in use is an issue, Hmmmmmmm something else to think about,
We had a feeling and done our research He was not pleased and insisted it was not Fibro, When we switched, All became clear, And here we all are,
Never get a full night of refreshing sleep, I am not very good with light or sound, If I sound bitter, It's because I am,
Plodding on forwards,
Omg I sound like a right old grumpy mare never mid,I think it might be due to the fact ,at 8 o'clock I wouldn't have had any sleep for 36 hrs,
🤣 I love all dogs but yes having two labradoodles they are special in my heart. They always know when I’m in a lot of pain but that could be me walking in the kitchen disturbing them when I need tablets but they come and cuddle in on the sofa when I can’t sleep! I’ve had no luck with male doctors and it was a female doctor that sent me off to the hospital. Trouble is I had the letter back from hospital with confirmation of Fibro plus osteoarthritis and now they have closed my case and referred me back to my GP, so no help will be given there as we can’t seem to keep GP’s as they keep leaving, apparently problem with the Manager 🥴 so you never see the same one! So self diagnosis keeps going on 🤣 I think we are all entitled to be grumpy mares as pain is no laughing matter but I do wish they could invent something to get rid of the dark bags under my eyes! X
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