I have been going round in circles for a few years between Dr's, referred Physiotherapists, osteopaths, rheumatologists and neurologists for chronic pain in my neck, back, sides and migraines.
Ive tried several treatments which have not been much help, I have had MRI scans on my brain, neck, back and body and all looks to be ok. 3 Dr's now have mentioned to me now that it appears to be a chronic pain discora and have told me possibly Fibromyalgia but today the neurologist I was referred to has said yes it is Fibromyalgia but that is not a condition it is a symptom and they cant officially diagnosed me with that. They have however couldnt answer when I asked what is it a symptom of and what could be the cause of my problems and they dont have an answer.
I have feel like I have been left in the dark and the onlt result is that I have been discharged again from another department with no advise other than to try and self manage my symptoms as best I can with massages, muscle relaxant medication and pain killers. All of which I have tried and nothing works.
I need to know where to go from here and is Fibromyalgia classed as a condition and is it diagnosable?
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HDav84
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Fibro IS the condition, it is a persistant pain condition, i have suffered with for years now. You have good days and flare ups but nothing causes it as such its not a symptom of something else. you may well have other conditions too as many of us do but fibro itself is condition enough!
Hi and welcome to our happy little band. Fibro is usually diagnosed when all other avenues of investigations have drawn a blank. Normally a rheumatologist will give the diagnosis. In my borough they then just discharge you and refer back to your GP. That's about the sum of it for me. You are then left to research everything yourself. I call fibro the cinderella condition as nobody really seems that interested. You will get more information, help and advice from this site than from any medic! You may be lucky and find a GP with at least a basic knowledge and willing to try different medications, pain clinic, physio and the like. Fibro is different for all of us so what works for one may not work for another and vice versa. I rely on processed food free, and refined sugar free diet, epsom salt baths (this helps with cramps and helps muscle pain). Wheat bags, tens machine, biofreeze and occasional help from chiropractor and hypnotherapist. Gentle exercise also helps - even if it is a stroll down the garden and back. Learning to pace yourself is always important, listen to your body and do what you can without overdoing it. Easier said than done and it's trial and error. Sometimes however the payback for overdoing it is worth it if it is something you really want to do We all have to have some sort of life! Hope some of this helps - I'm sure others will be along with their welcomes, advice and support.
I understand what u r going through I was diagnosed years ago and am still being bounced back and forth no doctor will let me try opioid and I have tried everything else nothing is helping and it is making me insane best of luck take care
This year Fibromyalgia was classed as a recognised condition that is incurable. That will add to you being able to claim benefits and mobility allowance.etc. i hope this helps. X
My GP suggested I try alternative therapies. I followed her advice. I was on Gabapentine and once had the odicial diagnosis from the Rhuemotoligist was changed to Duloxatine 60mg once a day. I went to a Traditional Chinese Medicine practitioner. I have been with her for a number if years because of having multiple conditions.
My Practitioner is not chinese but Welsh. The tcm she is trained in is the Original Tcm. There is a register of rhe qualified TCM's in the UK. Also I do Sun Style Tai Chi that is for Health. That has helped a lot. The College for the TCM is in Ireland but the
Professors who lecture in it are Chinese. It is 75% nutrition and acupuncture.
I have been able to reduce the Dulixatine by 20mg a day. I sometimes get break through pain but more of an ache than pain. I feel very fortunate to have a very skilled Practitioner. I hope this is helps. Natural trearment are better than addictive drugs. Not a quick fix but if it works much bettrr than drugs. I hope this helps. Xxx
Hi HDav84, I wonder if one day we won't be taken on a merry go round trying to get a diagnosis. I was diagnosed nearly two years ago, but like you I still don't have the answers I want. I've just started counselling and been diagnosed with PTSD, which has come as a complete shock. I have also been diagnosed with central sleep apnoea, although I have to have further studies to confirm the diagnosis and will have to see a neurologist. No diagnosis is easy to live with and your cause of symptoms might be something completely different, but if this information helps to guide you in the right direction I hope it helps.
Hi there, fibro is differently a condition that has many varied Symptoms for most people, yes I agree we all find ways to help like people have said Epsom salts baths , pain relief creams, accupunture etc , diet , but I would go back to doctor if you are looking for pain relief in the way of meds they can offer you something, all be it trial and error to find something that suits us. Like so many I did take a long while before I got a doctor that believed in this condition, I spent a few years being fobbed off and no answers not even a pressure points test, you do pick up a lot of advice from our friendly members , if you would like to lock your posts here’s the link healthunlocked.com/fibromya..., it normally generates more responses if a post is locked , take care you will find your way of of the dark it does take time and I can see you have been trying for along time already. So take care , pop on the forum again and keep us updated x
I can totally relate to you at the moment. For the past 12 years, since I was 11 years old, I have been to see so many specialists like yourself with the neurologists, osteopaths etc. It was only until 2 weeks ago that my rheumatologist just put it down to fibro. It gets to that point where you’re fed up of explaining your story from one healthcare professional to another and for them to just give you no real diagnosis or answer. You feel as if you are losing hope sometimes. To this day, I have never known what could have caused this pain from a young age.
All I can say is, just really learn about how this condition affects you and understand what works and what doesn’t work for you. Whether this means making small lifestyle changes, e.g at work or exercise etc. Self-management will give you the confidence to take charge of your health and is so important since doctors don’t tend to manage these types of chronic conditions very well. So, essentially it is all up to you!
As a pharmacist, I can definitely say that most of the medications recommended by doctors such as duloxetine, amitriptyline, pregabalin etc. mainly work towards neuropathic type pain and are not that effective for more somatic muscular pain. Opioids such as tramadol, may be helpful. But, the side effects of drowsiness/hangover effects can become overpowering and often worsen the fatigue that is associated with fibro.
There are always going to be days where you feel like you are in the dark or feel really really low. But, it is important to try and be positive and strong and know that there are platforms like this where you can go for additional support. Weirdly this is actually my first post on this forum. I guess your story seems to be the one that I can relate to the most!
I was diagnosed with Polymyalgia and have been treated with steroids for about a year. They have caused lots of problems. I have still had a bad back that they haven't been able to find out what is causing it. This has resulted in my mobility being really poor and I have now been on crutches for months. Finally this last week I had my first appointment with a Rheumatologist and was told I do not have PMR and that she believes I either have Fibromyalgia or even arthritis! I am now being taken off steroids very quickly and am suffering so much, even the morphine doesn't stop the pain when I try to walk. As far as I know Fibromyalgia is a condition, it is not a symptom of another illness. It seems to be overlooked and forgotten as they know very little about it and what causes it. I cant wait to get a proper diagnosis. Fibromyalgia is a recognised condition if you need to claim sickness benefits. Good luck with your battle. Hope you find something that works for you and eases your pain.
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