How long does it take for diagnosis for Fibro

I am waiting to see Rhymotology for blood tests, due to see someone by April 19th, how long are the results back in...I had another sleepless night last night...But have to admit I was alert enough to get two things right on Countdown.....Actually slept at 7 til 10 then....So as I struggle now to stay awake for the in-laws, meds taken and comfy settee. any info would be appreciated...xx

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  • That is an interesting question... I went to my GP 23 years ago, aged 25 ...With these strange pains he pressed points all over my body and I was going ow ow ow then he gave me loads of leaflets one was a local support group and he said you have fibromyalgia it was that simple for me... As one of my main problems was chostochondritis I had pain killers and physio for that and I only saw a rhematologist 5 years ago when I developed osteo arthritis...

    I think I was lucky in having a great GP.

  • like very grumpy i had symptoms for years and had been to various gps in same practice....a new gp tried various meds, injections then said she was sending to to rhumatolgist at hosp and said that I would probably be sent back home with a flea in my ear.....months later I went to hospital and was examined and given a fibromyalgia leaflet....WOW that was it...my diagnosis took 10mins with the right person/doc.pressure points were sore, poor sleep, accident/injuries, life stresses.

    Good Luck pjmain : )

  • Hello Pjmain,

    It personally took 2 years for my diagnosis of Fibromyalgia after blood tests, xrays, mri's & bone scans to exclude other illnesses. Here is some information on how Fibro is diagnosed, link below:

    fibroaction.org/Pages/How-I...

    The Rheumatologist then performed the trigger point test on me and I was diagnosed with Fibromyalgia.

    For more information on the Trigger point test please see link below;

    fibroaction.org/Articles/Te...

    However, everyone seems to have very different timescales to how long the diagnosis took for them personally.

    I hope the information is helpful

    All the best

    Emma

  • Hi fibro victim ,, it's getting it recognised by a good GP or getting referred to a specialist . A ruhmatologist should,,, I say should because I've heard not all are clued up on Fibro, recognise the symptoms. I was diagnosed by a ruhmatologist in only ten minuets after examining me I was surprised he diagnosed me so quick. It took two months of waiting for appointment after being referred , so there's a wait , get referred by your GP and see one . It's worth it for a good diagnosis you'll have it on paper if you need it. I honestly think Fibro now is getting more recognised . I have three friends that have it I live in a small Town and it seems this condition is one that's getting a lot of people . I hope you get the diagnosis soon and get the help you need . I suffered for many years until the pain was so bad I could nearly move and had many many problems . Once I knew what I was looking at I researched every direction connected to this condition and now feel a lot better. One tip for you, whist your waiting , this is what i did till i got diagnosed it helped a little,,cut out all sugar have only cane sugar if you have to have any ,,,Dnt have sugar substitutes ,, have a little honey natural sugars . Eat plenty of vedge and have only small amounts of meat eat lots more meals and smaller portions I have five or six a day small portions I drink water more instead ,, of having juice and tea. I've cut out caffeine and have lactose free in my cups of tea. It helped me with my IBS. And my sugar levels didn't go up then drop so bad so I got less headaches . I also found I didn't get so fatigued in the afternoon . It may help till you get diagnosed . I hope I've been some help to you. I know how blooming frustrating it is when you know you have something wrong , but need answers so you can get help . X

  • They can't test for fibro with a blood test, what they are ruling out is other things. When you have nothing else then they normally test for fibro. With the right Dr about 10 mins but saying that it took me 10 years to see the right Dr.

  • i drink 3-5 cups of tea a day with sweetners, because it is the only thing i have sometimes.for 2-3 days a week i don,t eat any thing.don,t feel like and i don,t get out of bed 2-3 days a week because if i don,t get up i won,t need to eat and or use gas or electric,.my son come up to my home on the weekend to do me food and help me around the house ,he cleans, washes for me pays my bills,,changes my bed,,but he cannot be with me every day because he as a son of school age, and he as to have a life too..so we get on with life. and as that proggramme says we wait for god.. i was told i had fibro afew years ago and i also have incontinance and arthitis, but it does not matter, this goverment does not care, i may even lose my home if i can,t afford the rent. even though my home as been adapted for me. i use less sugar now only use for visiters now, have i found a differance no.

  • direct.gov.uk/prod_

    You would benefit from getting your son to go through this document with you. These are the points you get for your disabilities ...you must appeal if you feel they have not taken evey thing into account.....ask for a statement of reason's if they have said you do not qualify...this will show you what points you have been given.....keep your doctor on your side... get a upto date ..fit for work certificate...and send in as much medical eveidence as you can get.. There is another publication which I will give you the link for when I find it.....try to cut out caffine it's not going to help with fybro nor the sugar.....and remember don't get angry get even...you need to focus on getting every thing you are entitiled to but they won't just give it too you..your going to have to fight for every thing you can.... Your son should apply for care allowance for you.....and as ladymoth say's if you feel your not confident to do this on your own ...get in touch with Citizenz Advice Bureau....

  • dwp.gov.uk/docs/wca-han...

    This is the other link it's really heavy reading but stick with it.....It's a real insight into how you will get treated at any interview with ATOS...it's their bible.....

  • Hi Sylvia, have you managed to get in touch with Citizens Advice Bureau yet?

    I am sure you are not receiving the benefits you are entitled to. they are there, but need to be claimed, or you won't get them!

    Living on benefits is never easy, but it's usually manageable with a bit of careful budgeting.

    Please do try to do this - it only takes a phone call.

    love from Moffy x

  • Hi there

    I had symptoms for 4 years (maybe even longer) after the birth of my second child. I kept going to the GPs and they did blood tests but no-one ever seemed to take an over view of my symptoms - I was going for tiredness, then being bloated, then visual disturbance, etc etc and blood tests were done each time but no-one said 'hey, you keep coming and getting your blood checked for different things lets work out what this is'! So I took things into my own hands and did lots of research inputting my symptoms into google (yes, I know I know Doctors HATE that). Lupus kept coming up time and time again (I had pleurisy and lots of aches and pains etc). So I went back to my GP and asked for an ANA test (which is the one they use to screen - not diagnose - for lupus). After all the tests I had done this one actually came back positive. I asked to be referred to a rheumy and he did lots more tests. As they all came back negative though he diagnosed fibromyalgia. So it was a fairly long process but not as long as some of course. And by going through the Lupus tests I suppose I was diagnosed quicker. I do think though there is still an underlying cause to my fibromyalgia (though I do accept this diagnosis) which could be autoimmune and I am currently exploring if it is my thryroid. I know if I go back and ask my doctor about this they will probably think I am a hypochondriac not satisfied with a fibro diagnosis but I do believe strongly in my case there is a cause of my fibromyalgia. I knew there was something wrong with me all that time, I just didn't know what it was, but I trusted my instincts and was proved right. MP x

  • My husband was diagnosed only last year but we knew he was ill but it just took so long. He began feeling unwell in 2007.

    I do agree with you on the fact that something must start off the Fibro. Paul's story is quite long winded but briefly a few stressful events brought it all to surface. Paul also has widespread OArthritis and Degenative Disc disease and is Vit D Deficient- which all commonly run alongside Fibro but you have to wonder as 5 years ago he was very active and sporty to now being registered disabled in such pain. How and why this happens just doesnt seem to get answered though !

  • Hi dont usually answer i just read all the blogs and get the good advice

    That u good people give i am now on decaff coffee i dont no if its workin

    As i feel pretty tired i have overdone it these past few wks and im now

    Payin the price, u said u thought it was lupus and u think fibro is linked

    I think so too. My mum has lupus and we have very similar symtons i have

    Been tested and have had fibro 4yrs . I hope the sunshine comes soon and

    We all feel much better xx

  • Hello, It took a couple of very worrying years for my husband Paul to get his formal diagnosis, which was eventually made by his Rheumatologist Consultant. He has Fibromyalgia and widespread osteoarthritis, Dengenative Disc Disease to his spine and is vitamin D deficient . The thing that worried us all along was that from being a fit,active healthy 41 year old he went down hill quickly and we knew he was unwell but found it hard (originally) to pin point to the GP. He had previuosly had Testicular Cancer when he was 29 so as you can imagine this kept playing on our minds that they were were missing something. The 1st thing for Paul though was definately the brain fog. We had a business at the time and he just could not remember instructions, orders etc and was just very vacant. I was so worried one day that I took him to A&E and they checked him over and xrayed him (probably because of his history) and concluded that they could see what I meant that he was acting slow but put it down to stress!

    Severe depression then hit. He was never a down or depressed person ever so this was a bit of shock to be honest. We had some financial worries at the time, (with Paul being ill affected our business so we closed it , then Paul suffered a mugging at knife point and then to top it his dad passed away suddenly and unexpectedly. The GP put it all down to this but looking back now the stress of the business had started all the Fibro Symptoms , the subsequent traumas cemented it and it all came out and started the osteoarthritis too. Wierd tho because as quick as the depression came on was as quick as it left. Literally he woke up one day a different man but all the pain then started . It started in his right shoulder, within weeks went to his feet and ankles, other shoulder, lower back, everywhere really. When he saw a podiatry surgeon he had stage 3 OA to his big toes and surgery was required. This was the same for the knees/neck etc as soon as he was referred the 1st visit was to tell him that he was at the stage where an op is required. He has has an Op on the left shoulder to date and is holding off with his neck, feet , and knees, only because of his age. (the one on his neck is to release a nerve -trapped by arthritic disc causing numbness and loss of grip )He has the injections but he sufferers pain all day every day. He doesnt sleep well, and struggles with walking and sitting in one place for long. He drops everything -including my best dishes lol but with all this we are still happy. We still laugh- if he goes to fall (which he always seems to when in the drinks aisle or by the olive oil bottles at Tesco! lol ) we just laugh it off. I always say to family if we didnt we would cry ! I can say that I am so proud of him tho, he never complains, he always tells the doctors that there are others worse off and he has a good selfless attitude.

    The diagnosis has helped both of us- just knowing what it is, and seeing the symptoms are exactly what Paul has/is experiencing eases the mind. The symptoms Paul has are so classic of Fibro .He is no longer able to work ,so I have started a business now based from home so I can help him and take as much time for appointments and physio that is needed. He never goes to appointments alone.

    Our lives have both dramatically changed. Our home is now a bungalow with a so needed wet room , our hobbies- are less active (no more ice skating, kiting and mountain biking for Paul !!) but we don't dwell but get on with it and remain positive. My advice to all wives and husbands whose loved ones are sufferers - be strong, be positive- and work at it together. Research and question everything until you get the right diagnosis....and finally- You can adapt and work at it and sometimes it can make people even stronger xxx Good Luck All and I hope all works out well x

  • If you have an appointment with a Rheumatologist then he should be able to tell you within minutes of being there.

    I don't understand why people have blood tests as this tells them nothing. Only a Rheumatologist will tell you whether or not its Fibromyalgia.

    My hip went and it was sharp shooting pains so I saw 2 Spinal Specialist as my doctor thought it might have been a slipped disc as did the first specialist until I ended up in hospital with chest pains and one of the consultants balled his hand into a fist and put it to my chest and pressed hard on it in a quick manner and it hurt. He didnt say anything but told me he'll refer me to a Rheumatologist. Within about 3-4mins of talking to a Rheumatologist, he told me I had Fibromyalgia and gave me a leaflet on it.

    Physio will NOT work and will actually make things worse if you have Fibromyalgia and I personally know this as I suffered at the hands of these physiotherapists. I did see one specialist physiotherapist after a RTA and even she said to me that she had to be careful NOT to touch the area's near my fibro as it will make my fibro worse.

    I take stuff from the Forever Living Products range which greatly helps. If you are interested in this, let me know as my website is flp-petsnpeople.myforever.biz

    I also go to the gym with my husband and walk my Dobermans for about 4-5 miles, sometimes longer depending on where we go if its at the weekends as the stuff from FLP really does help me and can help you as well. It also helps to reduce my blood sugar levels as I have diabetes as well.

    Doctors usually prescribe anti-depressants for fibro sufferers which I refuse to take. I did a lot of looking in to this till I found that FLP have products to help fibro sufferers along with a testimonial from a woman who now leads a very active life of which one is gardening and growing her own vegetables :-)

    I feel really sorry for those who's doctors put them on these anti-depressants and telling them they are the only meds that will work and nothing else will. Doctors do NOT want to hear about the more natural products which our own FLP doctor recommands. Yes we have our own doctor and also a vet as my Dobermans are also both on some of their products with amazing results.

    Sorry for rabbiting on but good luck with your appointment with the Rheumatologist and I hope you get sorted soon :-)

  • Just one more point on this. The Rheumatologist I saw asked lots of questions like do I suffer from tiredness, mood swings forgetfulness, restless sleep etc as all these can point to fibromyalgia.

  • hiya pjmain-took 2 years for me, lots of blood tests and visits to 6 different gps and then 40 minutes with a rhuemy, given a few leaflets then back to my gp for pain management options-hope you get help soon-take care-julie51 xxx

  • Thanks for that, yes I am already down for pain management due to my back pain..x

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