Hello, I'm in the UK and have most signs of fibromyalgia ( for 1 year now).I also have rhumatoid arthritis. My rheumatologist tells me to see gp as she doesn't deal with fibro ( surprisingly) , but my GP is extremely slow and not doing much ( did x ray, blood test ), they can't give me" proper" medication as they haven't diagnosed me yet so I'm suffering every day without help.
I'm now thinking of going privately. Have anyone you being diagnose privately? I think once i have a private diagnose , they can share documents and I can continue on nhs ( asked private rhumalogist who said they can transfer my diagnose to gp.
Any ideas ? I can't continue physically and mentally with this pain untreated .
( I do acupuncture, Tens machine , very healthy eating )
I lost 9 kg since unwell 😫
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I got lucky with a newbie doctor then - it took two appointments and she slapped it on my notes there and then after agreeing with me that’s what it sounded like 😱
it’s unfortunately not a fast track to diagnosis took me from 1987 to 2014 to actually get the label. Usually the fibro tag is only given once everything else has been excluded.
It used to be that only rheumatologists could provide the formal diagnosis but more commonly these days it’s GPs doing it.
Going private doesn’t necessarily mean you will get a better service. I went privately once and the service provided left much to be desired. All I can suggest is that you keep a diary of your symptoms and present them to your GP. I out all requests for referrals in writing so they form part of your notes. I then follow up with a telephone consult to make sure they haven’t forgotten.
As for treatment again this is difficult. As fibro is different for all of us, what works for one may not work for another. Very much a trial and error on the drugs front to find out what works or what combinations work for you. Once diagnosed you can ask for a referral to one of the fibro clinics for a one stop appointment where you will see several consultants and they put together a plan to send to your GP. I went to Guys and St Thomas’. My plan didn’t involve any prescription drugs as I can’t seem to tolerate them.
For me diet, gentle exercise, chiropractors and hypnotherapist, hot water bottles and room salt baths help.
I do hope you manage to get some answers soon. Any questions don’t be afraid to ask, we are generally a friendly helpful bunch.
That is soooooo slow .... I think I will feel better when I will have a name with all those pains and a diagnose , whatever diagnose it is .Without diagnose , I feel I'm going mad
To be honest the label didn’t mean much to me. I was still the same person with the same aches and pains. Even with the tag you will still get blank stares from folk. I suppose if meds work then there maybe a benefit to a name for the symptoms. The only piece of useful advice I got was “it’s essential you practise PMA (positive mental attitude) hard at times but it has kept me relatively sane- although some members would disagree with the same bit😂😂
hi, your quite right in many things you have said about fibro i also have osteoarthritis and iv suffered for many years and learning something new every day.
Recently my symptoms have got extremely bad mobility problems due to weakness of muscles and joint pains and spend majority time in bed (bed ridden), unable to sit up right best position lying flat on my back.
Could you tell me how to go about One stop fibro clinic(s) at guys with several consultants thats something iv never heard of and what exactly do they do
Initially iv been diagnosed with my gp and rheumatologist's and always been advised
i also don’t do well with medications with extremely high allergies/ hives.
I also believe in diet and general exercise. But who advised you of chiropractors and hypnotherapist and does it work ?
I suffer with sleep apnea and ENT nostrils breathing problems. Top sleep apnea consultant has given a letter that i would benefit having a bath installed for various medical conditions. But the council refused saying cannot change wet-room - any ideas what i can do
Hi, it took me 10yrs to get a diagnosis. Because someone thinks they may have fibro and fit all the descriptors it does not me they have Fibro.
Fibro can mimic so many other health issues. This is the reason it can take a long time to get a fibro diagnosis. A GP has to rule everything out and tests and results can take time.
I was glad when I finally got my diagnosis. Unfortunately it changed nothing . I am the same if not worse than I was 40+ years ago. But at least I now know why I have so many symptoms and pain etc.
I was glad my GP was not quick to jump to the conclusion I fibro. At least I knew I had nothing life threatening.
Agree with most of the others here - takes a long time to get a diagnosis and I had cameras inserted, monitors stuck on for a week at a time and scans and bloods galore over 5 or 6 years before I got "the label". However during that time they did find other things which would not have been found otherwise and were treatable and are now managed so I guess I would say trust the process. HOWEVER you do need a GP on your side, I'd had a couple of bad experiences with 2 GP's at my practice dismissing me and saying - "oh I get those, you'll just have to live with it" - later turned out to be GERD & 2 ulcers causing gastric palpitations which are now fully sorted but this was only because I made a written complaint stating that I wanted a complete review with a completely new GP that I had not previously seen who referred me to the correct specialist who found the problem. This same GP also eventually gave me the Fibro label and referred me here and to other sites where I've been able to find help and support.
How strange. It was my first illness.I had been going to gp but he decifed to send me to a rheumatologist. He did pressure pain test and immediately it was fibromyalgia. I thought he was crazy 🤪 absurd but he was correct .Hope you have success
Hi, unfortunately my rheumatologist told me fibromyalgia isn't "her remit" despite diagnosing me. I too have RA but I have to see my GP for the fibromyalgia. I was told from the start that it's a case of trial and error with drugs as not enough is known about it. I'm lucky to have a good GP who has sent me for physio etc but medication wise I haven't found anything which really helps. Tramadol was no use and amitriptyline caused urinary retention so I continue with acupuncture and paracetamol and despite not always very easy, walking. I hope you can find someone you feel confident with and who is understanding. Best wishes x
it took them four years to actually find a fantastic female doctor who was a locum as the other doctors in my surgery dismissed me all the time. She sent me to hospital and there I was finally diagnosed but then that was it as letter went back to the doctors surgery. The women doctor had left so I was back to square one. I then started to research. Took sugar out of my diet and I started weight training, yes there are still days when I have huge flare ups and just want to curl up in bed it seems to be the curse of fibromyalgia. Since December I haven’t been to the gym and I’ve gone back to square one again but I’m determined to get back on course as the depression has hit hard. I’ve given up on doctors our surgery has got worse as we’ve lost so many doctors who won’t stay so never see the same doctor and sometimes there is a six week waiting list!!! Look for a book called the fibro manual by Ginevra Lipton MD it was a big help to me.
Thanks. I was looking for more inspiration so have just ordered her book and food guide off Amazon. On the same pages found out about a weighted blanket and also a weighted mask for migraines, so considering those too. ... We live in hopes ... hopefully!
I hope it helps, I must admit I learnt a lot more from the book than the doctors! I have a weighted blanket and I must admit it helps with my shoulder pain and I use an eye mask as I have bursitis ( which I was told is part of fibromyalgia) deep joy 🥹 hopefully better weather is ahead as we all need blue skies to lift our spirits up. As others have said magnesium is brilliant I take the soluble one as I hate taking big tablets and have it an hour before I go to bed, and also when it’s bad Epsom salt baths are great for relaxing. This website is great as you feel you are not alone I just wish I could find a gym buddy as it would help me get myself into gear. When you are on your own there’s always an excuse not to go even though you know it’s good for you 😆
Thanks. Have never really looked at the term bursitis so will be trying to understand it better, except internet is getting rubbishy and inaccurate now. Can't take magnesium at the moment as needing to take quinine for hideous night leg cramps and together they cause a bad reaction. -Yes 'Deep Joy indeed... (My Dad and I (and my hubs) so enjoyed that Unwinism!)
I wanted to start chair yoga once week as friends in my village go but that started off the cramp again, although there were other large impactful stresses at the time. Still hopeful of being able to try it again! - Also hoping that by the time I have learnt much more about fibro the mysterious 'THEY' will have found the best ever, effective remedy/cure. - I think I get off lightly now but the hostage releases on TV make me think there are also too many hostages to the pain of fibromyalgia and the other mystery conditions. ... If it's any use to you, I've been using Rhodiola Rosea drops for depression since October - on and off - and it suits me very well and it gives me a bit of energy to do stuff during the day when I don't forget it. - Looking forward to getting my parcels of potential pain relief from Amazon! Thanks for the input.
Hi sorry you are suffering so much they don't rush diagnosis but when you do get a diagnosis you're not any better. I was 12 years before I got a diagnosis I thought an answer some treatment now, none of the drugs work very well so you're not actually any better 14 years on I'm lucky to get out of bed. so I wouldn't waste your money going privately but it's up to you I was diagnosed by a rheumatologist but my GP had already put me on some of the meds the year I got diagnosed take care 🙂
I was prescribed amitryptalline, and that must work for some people. It is a drug mainly used for depression. Tell your doctor you are depressed and you might get it! Knowing you have FM doesn't help much, as stated by one or two above.
Amitriptaline is quite far down the line of drugs they make you try for depression, I’ve not even been on it yet (although I do think it was the next one due to be tried) and I’ve been on 10+ anti-depressants before discovering it’s not depression that’s the cause but a symptom of something else.
So going to GP saying depression will see you walk out with an SSRI (citalopram or sertraline to start usually, possibly fluoxetine) and a ‘beating the blues’ leaflet.
Sorry to hear your struggling situation you are going through.
My story took over 10 years to put a name to my symptoms. However , I never stopped pushing to look and research self help and focus on getting the doctor to support me with anything that would handle my pain.
He put me forward fir the pain clinic course. plus living with long term illness course which I found very helpful in understanding my body and mindset of dealing with pain and others things that go with it. After completing my courses my GP put me forward to see a Professor at King's college hospital london who dealt with fibromyalgia syndromes and other illnesses.
On my first visit he confirmed I had fibromyalgia and needed support in dealing with pain and other symptoms concerning fibromyalgia such as swelling of my arms.
He runs a clinic which he was keen for me to attend however I didn't live locally and the journey took 6 hours there and back. From that appointment I decided to read and research self-help and diet and vitamins which would support my immune system.
I am older now and my symptoms are somewhat improved at times and sometimes horrible. I now have osteoarthritis which doesn't help my pain levels.
My mindset is to control my muscles with chair exercises and Stretching exercises through out the day. Keep moving and increase you fluid intake. There lots of information out there.
My journey with pain killers has been a nightmare 🙃 and due to the time/years talking them they now don't work. I decided to come off all my painkillers and only take Tramadol when I wanted to push my body to its limits. Like going shopping or gardening or a day out.
My mobility has been affected by Fibromyalgia and Osteoarthritis and I now walk with two sticks. The main point I am making here is painkillers after a while do not stop on going pain. Look for ways to manage without if possible. Use magnesium spray great for your muscles pain.
Take magnesium. Take vitamin D. Massaging warm oils into your muscles. Take Zine pills
Research which food you should and shouldn't eat with fibromyalgia. Or Arthritis.
Go on website of talking therapist and sign on for a therapist to talk to you about your situation and pain levels or just life.
There so much you can do while you wait for the name of your Condition but in the meantime be positive about you and this illness. Be in control. You will beat this with many team members on this site and the information available is reassuring you have great support and knowledge on how to keep dealing with this condition. Good luck 👍 you will overcome this horrible illness and emotions side of the struggle it creates.
You have been very brave waiting for the name of something that effects everything about you. That show strength 💪. Big hugs 🫂 🤗 stay positive. Xx
Thanks for the online reminder which I just read. I am going to look for and take my vit D and zinc pills after this reply. You may have given my day a big boost too with this advice and it's not too late for the B1 either. Best wishes for a proper pain free day. KJ
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