Frustration

[Jackapoo7]

Happy New Year, struggling with getting a definitive diagnosis, doctor at first thought MS but the test came back clear, then the pandemic occurred which held me back and now a year down the line feeling worse and fighting with the doctors to push on with a final answer. I'm still managing to hold down my full time job only because I took a different role less strenuous but finding it difficult to continue. If anyone has any advice on what I should be saying or asking the doctor I would be thankful x

[Dinkie]

May I suggest you keep a diary. It will certainly help once you get an appointment so that you can show the medics exactly what/where/how. It’s so easy to forget things as soon as you see the doctor. Appointments are hard to come by so don’t waste it by forgetting to mention things. I know it’s frustrating but to be honest many of us on here have waited decades for a diagnosis. The fibro label is usually given only after all other avenues have been explored and proved negative. It’s a long road unfortunately.To jolly your GP along I would put your concerns in writing - this will then form part of your notes so they can’t forget to note questions on your file. Follow this up with a telephone consult. I’ve found this the only way of concentrating my GPs mind. Good luck

[Fuchsia123 in reply to Dinkie]

I see you mentioned a pain diary. That might help my case also with my rheumatologist. I’m no good at this kind of thing though so could you give me an idea of how to do a pain diary. Do I just list my symptoms each day or do I write a proper journal type of thing. Many thanks x

[Dinkie in reply to Fuchsia123]

I got my first one on Amazon a fibro specific one. I then photocopied the blank forms so I always had a spare😁

[Fuchsia123 in reply to Dinkie]

Thank you so much

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org

I would second the suggestion to keep a diary of all your pain and other symptoms, as this helps your doctor to see the bigger picture

[Fibroska]

Hi there Jackapoo7, Happy New Year to you!So sorry to hear about your struggle, i do hope you are able to see someone soon and get an answer, only when we know what we are dealing with, can we deal with it.

I totally agree with Dinkie about keeping a diary, noting questions when you think of them, having a list ready when you can actually see/speak to someone.

I live in Scotland and was referred to a Rhuematologist for my diagnosis, don't know if it would be the same where you are; I was also referred onto a Pain Clinic/Pain Management Programme, you could enquire if there was anything similar available(prob. when actually diagnosed).

Please know you are not alone, we have/are all frustrated with GP's missed/late diagnosis, as Dinkie says, follow up with phone calls. I'm sure you will receive some awesome advice and support on here, I know I have certainly been on the receiving end, good luck and I look forward to hearing how you are getting on.

I'm sending warm wishes and gently hugs, remember and be kind to yourself.

Stay safe, keep well and be strong.

[BeccS77]

I had to show my doctor the information online and basically point out every symptom to my doctor- I said I know what I am going through better than anybody and after he read it he agreed and finally I had a diagnosis after just over 2 years of symptoms!

[JayCeon]

Hi - yep, definitely pain diary, if necessary sleep & gut diary. I would also consider trying different kinds of physio early, like osteopathy, depending on your symptoms (for me cryotherapy & TCM/acupressure helps most, but also gentle exercises and yoga). I've managed to get pains down and energy back so I can have a good life, considering, but I'm really struggling to get to work again because of Ache & energy then.Just talking to someone with symptoms that'd fit a bit more to MS than fibro, but with needle-phobia, so I'm interested what tests you had done?: I'd've thought MRI and spinal tap, but I know my spinal tap wasn't a piece of cake in *any way.

[rocklady73]

I had to go through many things trying to explain to the doctor then I got a flare up in the doctors office, could hardly walk and hands curled THEN he sent me to a rheumatologist who did the points testing and told me he was sorry, it wasn't rheumatoid arthritis is is Fibromyalgia. I had many questions but no answers. Keep a diary, research as much as you can. This site has really helped because you can prove it exists. The doctor still sends me for tests just in case. I had a MRI a few weeks ago and waiting for the neurologist. I was falling two or three times a week and dizzy. It is better now due to supplements and exercise and basically trying to take care of myself and accepting it. I have had this for most of my life. Hang in there and keep asking questions and maybe some day they will find an answer.

[Lovecavatese]

Hi Jackapoo7, I was always asking for appointments with any doctor who would listen, then my GP suggested fibromyalga. it was the pain specialist after quizzing me on the phone who said I have chronic widespread central sensitisation, which is I believe the same, someone please let me know if not, Tge docs are more helpful now, trouble with me is I never told the docs when my back went or migraines happened etc, only until I was so ill I was constantly asking a doctor for help. Take care.

[LisaSnow FMA UK Volunteer]

I am glad you don't have MS.