trying to get a diagnosis

[CarrGomm]

Hi my name is Jane I am new to this site.

I've had whole body aches for 20 years I am now 65. I have seen my GP on countless occasions regarding this but to date nothing has been done. I had a disectomy 2014 due to severe sciatica, and an operation for a prolapse bowel. I have arthritis in my thumb , neck, shoulder and feet. I was diagnosed with a hiatus hernia years ago but a repeat gastroscopy recently said that I haven't got a hernia!!!! I suffer terrible migraines at least one a week which I take sumatripton for, which thankfully work really well. If I do housework, ironing, gardening or anything too strenuous it triggers a migraine.

My blood tests are always fine I'm the correct weight for my height and I excercise but I'm finding it causes me more pain lately. I still work as a companion/carer for the elderly . Despite the pain I push on as much as I can.

GP recently referred me to rheumatology saying in her letter that she has examined me and in her opinion thinks that I may have Fibro, I read this letter on my NHS app. At no time has she examined me and has never mentioned Fibro to me. I received an appointment last week for rheumatology but 2 days later it was cancelled, no explanation!!! Went back onto NHS app and saw letter from rheumatology to my GP saying that Fibro is dealt with in the community and not in their department.

I take tramadol and paracetamol i've been on it for years, I'm so sick of the pain and just want to know what's causing it I do get very tired at times but can still do all the normal things but always in pain whatever I do. Does this sound like Fibro ?

Sorry to go on but I have no idea how to get this sorted

Thank you

Jane.

[Fibrooh]

Hi Jane sorry to hear you are in so much pain. Fibromyalgia is diagnosed by exclusion ie tests for other causes of pain and fatigue are negative. That being said there it is of course possible to have arthritis etc as well as fibromyalgia. I was lucky enough to see a rheumatologist who confirmed my GPs diagnosis so I can imagine your frustration at not being able to get an appointment with a specialist.

[CarrGomm in reply to Fibrooh]

Hi I'm very relieved that they can't find anything more sinister wrong with me but I want to know if it's fibro and how I can manage it better. After reading this thread it does sound very much like it. I've decided to try swimming to see if it helps also pilates if I can manage it. Everything causes pain but if I strengthen my muscles it might help as I get older. I'm not sure if it's the right thing but I am terrified of not being able to do things I've always been a busy person and can't imagine not being able too do things that I love. Thank you for your reply

[Dizzytwo Moderator in reply to CarrGomm]

Hi there, I am so sorry to hear how you are struggling. It can be difficult to get a fibro diagnosis, it took me 10 years.

I know your desperate for answers. Unfortunately no one on here is qualified to answer your question.

But imo pain is pain no matter what title it is given. So please be assured you are very welcome to our group even without a fibro diagnoses.

You may feel that answer is not very helpful. But I have had fibro for 40+years and I look back and wished there had been support groups like this before I got a diagnoses. The outcome would not have been any different for me. But the support at the time would have been tremendous.

So please feel welcomed and maybe try our search box . Read the many thousands of Q&A from our wonderful members. They are always willing to share their journey or offer an opinion or advice if asked for it xx

Momo

[1499]

Hi Jane, Welcome! I am so sorry about your situation. I have fibromyalgia, spondylitis, back probs and knee damage which affects my walking now and I am unable to go out even for a short walk due to the knee and back pain. I am also on tramadol and paracetamol and suffer from chronic fatigue though I feel the tramadol make me so tired also.

I suffered for years with pains like electric shock pains at times and they seemed to flit all over and I had so many weird symptoms not knowing what was wrong with me. Life was so very very busy and after ten years and having what I would call trauma (my sister being so ill for years and passing away then my parents whom I also looked after) the pains got so bad and I could hardly get myself out of bed. My husband had been at me for years to see a GP but I felt at the time I was too busy and carried on.

The locum GP whom I saw when things got really bad thought I maybe had MS at first, then after examining me she said she was convinced I had Fibromyalgia and M.E but would do blood tests. She asked about my life, and told me if I didn't stop looking after everyone and trying to get a rest I would end up needing a Carer. At that point I had no knee damage. She explained grief trauma and stress can play a big part in Fibromyalgia and she advised my body didn't know how to relax.

I had my own family to look after also and was trying to help with my grandchildren too so it was overload really for years. When you have family you love who are ill they naturally become your priority and it is hard to get time to relax. I was eventually referred to Neurology , then was advised after waiting for 7 months that they no longer see Fibro patients, it is the Pain clinic. I no longer attend there anymore although the Consultant was so nice, but as far as help with the chronic pain and then taking the knee condition which showed up on an MRI scan, they really have been unable to help me. It is a case of just trying to get through each day.

I am in pain all the time, and although I was a fussy housewife I really have no option now but to pace myself or I end up in bed with Fibro flare ups for days on end. My knees lock if I kneel and there is no operation apparently to help my knee chondromalacia which also holds me back a great deal and I am unable to get out now. You seem to have had various ops and things over the years and I have heard that some people can take fibro after surgery or stresses in their lives. They say many people who suffer from post traumatic stress disorder can take fibro and I don't know if you have experienced anything like that in your life?

You really are needing your GP to tell you if she/he suspects you have Fibromyalgia , there are so many symptoms with it and we are all different. Most people with Fibro I have found have other conditions also. If you are working in the Care Sector I would advise you be careful if the work involves a lot of physical work. The pain clinic's advise to me was pace pace and pace yourself, but it is very hard when you have been a really active person all your life and looked after everyone. They say fibro doesn't get worse as you age but I disagree with that as so many I know have worse symptoms now. The only other person I saw outwith the Pain Consultant was a physiotherapist who advised with my knee condition and the fibro that there was no exercises he could give me to help, it would only be pain relief from my Dr.

There are a few books on Fibro that can explain a lot of the symptoms and we are all so different, and many of our fibro-family on here I am sure will give you some useful information. There is also a Fibromyalgia monthly magazine you can buy or read online if you are interested. Not able to sleep is one of the first symptoms I experienced, but thankfully I am not so bad now but can be awake the whole night at times with restless arms and legs. I never feel refreshed either even after a few hours sleep it is just constant tiredness all the time. It can affect your body temperature and so many other things, and I recently found out as I suffer from chronic sinusitis that this can be a symptom of fibro also. The electric shock pains when walking any distance when I was in my 50's was due to fibro I was told and I recently turned 70. Doing anything repetative even in the way of hobbies, house chores, or trying to do wee bits in the garden cause me extreme pain and I spend at least part of every day now in bed. I do however try if possible to still keep as mobile as I can.

Apart from my pain meds I use a tens machine at times, heat pads, hot water bottles, and many years ago I went privately for acupuncture which I found helpful in the early fibro days. Most fibro sufferers like myself have bought every lotion and potion in the hope of getting some relief. I was put on Amitriptyline when first diagnosed which really helped the electric shock pains but eventually stopped working after a while. I was on Pregabalin in 2016 which at first I thought was the answer to my prayers, but the dosage gradually got increased as the fibro got worse ( after I lost my husband ) and I had side effects so came off them and just rely on my pain meds now.

Sorry for giving you my life history lol! I wish you all the best and please let us know if you get any updates on your condition and a proper diagnosis would be good!!! I really hope it isn't Fibromyalgia to be honest with you and something else that can be treated more easily. Wishing you well, hugs x

[CarrGomm in reply to 1499]

Hi thank you for your post. I have experienced most of what you have said, electric shock pain mainly in my back. I too have to not overdo things as it causes me so much pain for a few day's afterwards. I'm on amytriptyline 10mg for the last couple of month's which has helped a bit with electric shock pain I think. My eldest daughter was diagnosed with breast cancer at the age of 33 and then it returned at the age of 39 despite no history of it in our family. She's been through so much surgery and treatment but thankfully cancer free now. My youngest daughter had a mental health breakdown and was so ill but again a lot better now. I have 6 Grandchildren whom I adore and help out with. We also support our 2 wonderful son-in-laws through all this. My husband has had prostate cancer twice but ok at the moment. I nursed my father-in-law until he passed away a couple of years ago so maybe all this has not helped me but my pain started 20 years ago before any of these events. I'm houseproud and I'm determined to keep going ha ha! My husband is a fantastic support too me so I'm very lucky to have a lovely family behind me. I just get so frustrated with the medical profession 's lack of help over the last 20 year's. I rarely go to the Gp and when I do it's for a good reason. I have Gp appointment on 11th April to discuss my referral and ask why she said she examined me but clearly didn't. Take care and keep going.

[1499 in reply to CarrGomm]

Hi CarrGomm again!!! You certainly have had your share of worries with your families health problems over the years and traumas as I call them, which I feel most definitely will have affected your fibro causing bad flare-ups.

I do hope your eldest daughter has fully recovered now from her breast cancer please God. An older Dr friend of my Mum's who sadly passed away a few years ago, said many years ago she felt the contraceptive pill and HRT given to women now would see breast cancers and others cancers happening over time.

To be honest I have so many friends all who have had breast cancer and all took HRT yet they say HRT doesn't cause cancers. Growing up and having lots of aunts and cousins, none of us thank God have experienced breast cancer and it was something growing up I rarely heard of. It has sadly become so so common.

I realise our modern diet possibly, meds or products we use now could be related also and anyone can develop cancer. I have a dear friend who has the breast cancer gene in her family. Our Dr friend felt it was dangerous taking hormone treatments of any kind, and women having IVF also are advised breast cancer can be a side effect. A friend's daughter took breast cancer with having IVF sadly and she advised she wasn't made aware of this at the time but she is fine now thankfully after treatments. The contraceptive pill which many are not aware of can cause infertility in some women and they then seek fertility treatments including IVF. I don't think we realise the power of medications and their side effects.

So many people have fibromyalgia and it has become so common, though I realise Dr's seemed unaware of this condition for many years and some are still not able to diagnose this. It would be great if we knew the exact cause and hopefully with fibro and so many horrible cancers and illnesses we will get some answers eventually.

I am so pleased you have a lovely husband though despite his own health issues is able to help you now and you have a loving family supporting you. Family are so important and grandchildren are a joy!!! I love seeing them. I feel so blessed as many aren't as fortunate. Hopefully you will get some help with a proper diagnosis, the amitriptyline defiinitely helped me in the early fibro years and hopefully they will keep working for you.

Wishing you and yours a happy and healthy Easter! hugs x

[Dinkie]

Sorry to hear of your problems. Can you see another GP who may be more clued up on fibro? Another alternative is, if you can possibly afford it, to go to a rheumatologist privately for the diagnosis. If you finally get a diagnosis of fibro then, not sure where in the country you are, but you can then ask for a referral to one of the fibro clinics dotted around. I went to the one at Guys and St Thomas's. Spent most of the day there seeing various specialists who then meet and discuss a plan of action with you. They then send that plan to your GP. It's only a one off appointment but it was well worth it for me.

Good luck with your quest.

[Kennyv66]

Sounds like classic Fibro symptoms, you should try to see a neurologist and you need an actual diagnosis. It isn't an easy disease to diagnos but the neurologist should be able to figure it out. Good luck and look into homeopathic treatments they help me alot

[Smilesalot]

Hi Jane,Welcome sweetie and hugs 🤗 Dawn

[Yassytina FMA UK Volunteer]

Hi Jane and welcome, rheumatologist s are normally where doctors send patients for diagnosis if they are not sure ,(perhaps things are changing now)my doctor diagnosed mine and CFS. I would differently go back too your GP as you want some answers eventually, tiredness, pain are are on fibro list of symptoms. You do sound as if you are pushing through all the time but your current pain killers are not working very well for you by the sound of it😟. The forum is a good place too come chat , read posts and get friendly advice. We do say use the pacing method during the day when ever possible , I certainly need too and even more so at the moment , like you I want too stay as active as possible but I have learnt over doing things result in either a pay back day and near enough coming too a standstill. The one thing I look forward is a long soak with some Epsom’s salts in the bath and using my evening too rest after(not sure is your work is in the evenings ?)but lovely too be a support too people in need xx

[nonmarothonpain]

go private for a diagnoses it cost around 150 pounds but you will at least get the answer . i ended up getting both private and nhs diagnoses as gp though i had lupus and i could not stand the 3 month wait on the nhs to see someone . gone are those days 3 months lol both consultants both said fibro i also have extensive arthritis which was diagnose years before as early onset .well in 70 now and wow have i got pain and stiffness . needing a hip replacement as well such a joy . so just do that and then youve got the diagnoses . private will not refuse to see you .