Worlds longest introduction (sorry!) - Fibromyalgia Acti...

Fibromyalgia Action UK

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Worlds longest introduction (sorry!)


Hi there! I'm Keli, im 35 and I'm, as yet,(6years after symptoms started) still undiagnosed 🙄 I've seen multiple doctors all of whom have given me blood tests (vampires!!) Everytime they've come back with no issues found, one doctor told me I was low on vit D but I was living in Yorkshire in winter so obviously! 😂 I have constant fatigue, no matter the amount of sleep I get I always wake up feeling more tired than when I went to bed. I have tenderness in my thighs, hips, top of chest and top of both arms. My shoulders are always tensed and aching no matter what I do. This ache goes up my neck- I can no longer turn my head to the right- and causes shooting pains into my arms if I'm really lucky my hand will spasm and I'll basically throw whatever I'm holding. On the plus side this means my husband tends to brew up more now!! 😂 a doctor about 3 years ago told me she suspected fibromyalgia and prescribed me 10mg amitriptyline to take at night, they may as well be tic tacs! She also told me to come back when I had a flare up, my flare ups aren't very often most of the time, I'd say a bad one every 4/5 months but they start with increased sensitivity in the tender areas, I get fogged to the point I can't mentally or verbally string together a sentence and then the next morning I physically don't even have the energy to get out of bed so going to a doctor isn't possible for maybe 2 days when I flare up. To make matters worse we move house a lot due to the nature of my husband's work so sticking to one doctor for a prolonged period of time is not usually an option. We moved back to Yorkshire 5 months ago and as soon as my doctor saw that I had a prescription he refilled it and basically chased me out of his office! I'm giving up hope that I will ever get a diagnosis! From my research of symptoms I think I'm looking at fibromyalgia, cfs or lupus. I know none of these are curable but at this point I don't care! I just want someone to stick a pin in this whole mess and say "No you're not crazy, THIS is what's wrong with you!" So that I can make a plan and move on with my life. If you got to the end of this thank you! I know it's long but I needed to get it out to people that might understand. Xx

25 Replies

Don’t worry 😉 about the how long it is you get your point across. It is very frustrating trying to get Doctors to 👂🏻we had CFS/ME from 17 to late 40 and Fibromyalgia came on in middle of that time. But it took to I was 28 until was diagnosed with ME/CFS.

Mizvit in reply to Bobby3

Hi thanks for the reply. Wow so that's a long old wait for diagnosis then? Awesome! Excuse me while I go bang my head against a wall! 😂 I think I'm at a point now where I'm just working on the assumption that it's one of these and trying to take advice I find in research etc and incorporate it into my day to day life just to stop myself going under with it all. I think the most soul destroying part up to now is just getting SOMEBODY to help Everytime I go to the docs I end up in tears afterwards through sheer frustration.

Hello and welcome!

Just wondering if you have seen a Rheumatologist yet? If not, perhaps you could ask your doctor for a referral, and if you have already seen one, ask if you could be referred to either a pain clinic or a pain management course.

Sadly, it can take a long time to get a diagnosis, but at least you can put a name to "it"!! And we need all our energy to put into our everyday lives, have you looked at the mother site for this group, there is lots of useful information on it.?

Take care xxx

this link might be of help ,they will be able to point you in the right direction to seek help and advice on geeting your conditioned diagnosed

You really need to see a rheumatologist. Ask your GP for a referral but be prepared for await. Varies from area to area but I had an 8 month wait so I booked to see one privately. She diagnosed fibro and wrote to my GP. I didn't bother going to the GP for any treatment, they're useless here. The NHS Rheumy also diagnosed fibro.

I find I can control the pain. I bought a tens machine (£20) and it's been really helpful with shoulder pain. When it relaxes my shoulders, that reduces the neck pain. Perskindol gel helps my neck pain too. Magnesium spray also seems to help.

I haven't found anything to help with the fatigue. I try to pace myself but it only takes a day when I do extra things and that's it, I can barely stand up.

Push your GP for an appointment with a rheumatologist.

Hi, I finally had my referral to Rheumatologist last Wednesday and got my diagnosis of FM she told me they were the only ones that could diagnosis it, so you definitely need a referral. I have also had low and no vitD in the passed and with that it causes exhaustion even after sleep, I was then sent to a sleep clinic and diagnosed with mild sleep apnea but and this is a big but I believe this was all FM rather than separate entities. Keep going back to the doctors. Write a pain diary, as well as a food diary and also a diary that states what you can and can’t do. I just remember you are not alone. ❤️

Everyone has said what I would say, I feel for you as I thought I was mental and all the pain Was in my head I was as diagnosed 3 years ago, then the greiving process began as no cure so I had to except it and carry on I could go on for ever so I’ll stop before you pull your hair out lol I hope you soon get your answer xxx have a read up on d ribrose it’s for fibromyalgia and cfs good luck xxx

You don't need to apologise for a long explanation. It is frustrating feeling dreadful all the time and not knowing why. I think you need a specialist opinion to get a correct diagnosis. Make a list of the questions you want to ask and tell the doctor when you sit down that you have lots of questions, either ask them directly or let them read your questions and don't leave until they have answered each one. Having this discussion might encourage them to refer you to a specialist and they can give you answers. Tell them that you have joined our site and you are worried that you might have fibromyalgia, that might give them a starting point to work from.

Hi I have had fibromyalgia about 8 years ( diagnosed about 2 years ago) it took pushing - doctor's!! I changed doctor's 4 times until I got the one that listened. ,I have had so many bloods done (loss count). I have seen a rheumatologist and a neorologist I have had electro muscle test MRIs and I have seen several physio and the chronic pain clinic I been on several drugs (all gave me bad side effect) so I have been drug free for over a year I do aqua , swim , walk and eat clean foods and have some supplements i to pace I try not to get low (one of my triggers) and I manage a good life I read my body well if I hurt I rest - I have had to learn to be a bit selfish or i crash - good luck with it all - I found it a little easier when they believed me and I was diagnosed. Neese. x

Wow! Thank you all so much for your replies! You've given me lots to go on! I'm going to write everything down including the refferal requests and at least this way I'll be 'armed' the next time I go see him, I've got a feeling he'll be more than happy to refer me that way he can palm me off as someone else's problem! 😂 his last lot of advice was take paracetamol for the pain and go to bed earlier 🤦‍♀️ because I'd be bugging him constantly if it was that easy!! I think over the years I've started to give up, I was scared of being labelled a hypochondriac or chasing medication ( that's why I'm still stuck with pills that don't make a dent in it!) Just reading you guys saying "I've been there too" makes it easier for me so thank you! Time to read up these websites you've suggested!


Hi Keli,

Huge Welcome

Your Story is so familiar, and very much like my own.

I was diagnosed finally last year, after years of going back and forth to the GP, back pain, hip pain, shoulder pain, general stiffness , fatigue, low mood ,memory. The list goes on. I had scans , X-rays and a multitude of bloods. ( A part from vit D a little low, all ok .. yes I too live in Yorkshire! ) I’ve been to sleep clinic, neurologist, and never got full answers, and thought I was going crazy!!but finally last year I was referred to Rheumatology, to rule out RA.

I went to my GP, with a print out of a list of fibromyalgia/CFS/ lupus, Symptoms and ticked all the relevant ones, ( every single one for fibromyalgia) and pretty much said I had to get answers for the sake of my mental health, this has been going on for far too long.

The only way you can get an official diagnosis is through Rheumatology . DEMAND, you get referred.

I really hope you get answers soon, I and all of us on here feel your pain and frustration.

Your symptoms do sound very typical of Fibromyalgia, but only a Rheumatologist can tell you after ruling out anything else.

Best of luck. Xx

Mizvit in reply to Hidden

Thank you! I like that idea of printing out symptoms and ticking them, I tend to do a mental ticklist but this I can show him! I think if I get no joy this time I'll find a private rheumatologist and go that route xx

Hidden in reply to Mizvit

Hi again, you do need a good GP, who is willing to take you seriously. With me, They’ve been good at referring, but then when results come back as no further action, eg... hip scan no problems found... it just got shelved until I went back with another problem and the process started all over again.

It’s about joining all the dots, and making them understand how important it is that you get answers. If it is Lupus then obviously that needs treatment, and Lupus will often show some indication in your blood results, eg. A positive ANA but I suspect it is Fibromyalgia, but ONLY a Rheumatologist can tell you that. I think if you don’t get a referral on your next GP visit, then tell them you’ll have to go private because you can’t go on forever wondering what the hell is wrong with you.... not crazy! ! ! Xxx

I would go to your GP and ask to be referred to rheumatology mention that it was previously mentioned by a GP and that u want it looked but certainly your symptoms all fit in with fibromyalgia x

here's a long one for you to look at !!

Hi, Keli, I'm John and being 76, people put down my symptoms to probably Dementia; but they aren't! - I've had most of them since my first brain tumour in 2002, when they also had to remove my memory. It's strange, but everything you tell us, even the symptoms, runs along similar lines to my own story. We've had 21 moves in the last 50 years of our marriage, ending up in Harrogate (where we bought a new house at Killinghall Moor).

I retired quite early, and a brief teaching career was cut short by the brain tumour, followed 4 years later by another. My list of medications steadily increased, and as my wife became an almost full-time Carer for me, so did hers. She now takes amitriptyline, but my meds, now up to 20 different ones to cope with side effects of the 2 brain tumours don't include that one.

The side-effects began with epilepsy and after 3 wks in hospital they found a drug to control Epilepsy plus an anticonvulsant to reinforce its effects.

Meanwhile, my vigorous daily walks with our small dog were prevented by a couple of heart attacks. followed by another, plus Angina.

Finally, I started to lose my balance and control over some other bodily functions decreased severely, and I was taken into hospital again. It took them three weeks to diagnose Lupus, because this affliction seems to exacerbate the things which you have previously overcome, such as spinal arthritis, which has now given me enough curvature to reduce my height by about 4", so the Drs were led astray as Lupus kept reappearing in different disguises. My walking ability has reduced to about the width of a main road now, but my mind is still limping along well enough, and Hydroxychloroquine seems to reduce the effects of the Lupus to mostly manageable proportions.

I now have to take 21 different meds every day, some more than once, so I rattle when I move!

I hesitate to approach my Dr these days because I don't think I could take any more pills, or spend any more time in wards full of genuine dementia patients. However, I can't complain - I've been looked after really well, so I count myself as very lucky!

I hope someone will refer you to a good hospital, where a Rheumatologist can have a go at diagnosing your symptoms . . . . . Good luck!

Mizvit in reply to SLEEPINGDOG

Thank you very much! Wow that's quite a list you've got there! It sounds like my husband and yourself were probably in the same line of work- we've had 8 moves in 8 years of marriage so far! Lol! I'm determined to get a diagnosis now so I'll probably just end up being the patient that GP's roll their eyes and try to avoid! 😂

military? Sorry for the Epistle - I should have maybe divided it into Chapters!

I wish you the very best of luck. We live in Huntingdon now, so I got to go to Addenbrooke's and Papworth. Lucky, eh? . . . . . yeah! Could have done without the whole thing though!

Mizvit in reply to SLEEPINGDOG

Yup he's military 😊 it's fine I managed it all well enough lol. I'll bet you could have done without those wonderful 'visits' lol!

Hi, getting a fibro diagnosis can sometimes be a poison chalice. I was diagnosed a few years ago but now EVERY new symptom I have is put down to fibro. For my GP it's just an easy option because she doesn't have to do anything, just wave more painkillers at me and show me the door. I have multiple health issues from hypothyroidism to congenital lymphoedema. I am in constant pain and feel totally wiped out most of the time yet it must only be the fibro apparently. I'm now at a point where I avoid the doctor as there really is no point any more. Luckily I'm a tough person and continue to work and distract myself with many interests. I am also blessed with a wonderfully supportive loving family. Without that I don't know where I would be. Take care of yourself. Helen xx

Thank you. I don't understand why doctors are so happy to lump everything in as one because it's easier! Surely the whole point of being a medical professional in the first place is to help and heal. I tough it out too- my husband says I'm just pig headed but I'm working part time in a school and completing the CPD courses that come with that, just about to finish an ou foundation degree, revising for my GCSE science resit and hoping to start my teaching degree at university in September. Fortunately like you I'm lucky enough to have a wonderful family and my poor ever suffering husband to support me so I do consider myself lucky I know there are people that are a lot worse off than me.

helen66 in reply to Mizvit

You sound so much like me! I truly believe that our future with this awful condition is mainly in our hands. I've been fighting so many illnesses for so many years and haven't found much help from health professionals. My saviour is to keep occupied, active and interested in life. We are indeed lucky to have the support we do and we should also give ourselves some credit for staying positive (even when it's really really hard!) It's been nice talking to you. Take care xx

Thankfully my GP automatically referred me to rheumatology, it took 3 visits, lots of blood tests & an MRI to rule out other things before I was diagnosed & I was relieved to know what was wrong & realise I wasn't going mad! My GP isn't that clued up on fibro, but he listens, is understanding & is happy to be led by me. Maybe not ideal but it is working ok.


Hi Keli, I am older but I’ve had symptoms since your age, I found that your story is similar in the fact that Doctors kinda want to move you along quickly when they don’t have a prescription to give you for your symptoms. They are trained to treat symptoms, but theirs so many they get confused on diagnosis, it took me over 20 years to get diagnosed with fibromyalgia / ME . Hundreds of Doctors and liters of blood all normal and a little anemic. Yet I spent days and weeks and sometimes up to three months waiting away. Uuugghhh. Couldn’t walk very well weak. Finally MRI told I had severe spinal stenosis . Explains a lot. Nerves effect a lot. Hope u can find a Doc to listen, Sarah Meyers on U tube helps w diet and treating naturally. 🤓🐌🐢

Thanks I'll have a look at her, I'm willing to take all suggestions 😊 xx

Finding a Dr so important who understands and does not have the mindset of it's all in your head...i have brilliant Dr who referred me to rheumatologist. My Dr put me on different meds until I found ones that work for me. Gabapentin morphine and amytryptiline. I thought It was actually all in my head of all the symptoms you are experiencing..drove me nuts but now I've come to live with it and accept it will never go away :( poor sister has it but her Dr won't have it...all in her head apparently...vitamin d has been taken off me after lovely letter from nhs claiming costs cutbacks blah blah so I now have to go to health shop for these. I buy the yearly subscription just over £100 so my prescriptions all covered with costs so all you people out there it's so worth it. My chemist said my monthly meds would cost roughly £100 a month if I didn't have the pre payment certificate..good luck with everything x

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