New Fibromyalgia Diagnosis

Hi all this is my first time posting.

I am 41, married with 3 children aged 17, 14 and 12.

7yrs ago I started feeling exhausted ALL the time and getting pins and needles in my hands a lot. Dr told me I was depressed and prescribed fluoxetine but it didn’t do anything other than make me feel mental 🙄 over the next few years I developed other symptoms, stiffness in my hands. Pain in my wrists, widespread pain in my chest, arms and legs and sometimes my face. Burning, tingling feeling in some areas. I’ve become clumsy, tripping over, forgetful, zombie like and can’t concentrate, pain in my collarbone shoulders and back of my head. Can’t sleep and wake up feeling like I’ve been ran over by a train.

things got worse during lockdown but I’ve not been able to see a GP yet. I had some nerve tests done on ny hands and was told I had carpal tunnel I waited 11m for injections and they haven’t helped so now saying it’s not that. Waited 14m for a neurologist appointment, I was in the room for less than 5 mins she asked me a few questions and said there was nothing neurologically wrong with me and told me to go back to my GP who then said she thought it could be fibromyalgia. I’ve had several blood tests to look for various things, to rule out arthritis, menopause and other things all come back clear. Over the last 2 yrs I’ve tried amitriptyline and pregabalin And codeine nothing works. I’ve been told by GP there is nothing that will help me. I’ve self referred to physio but the waiting list is 9 months and the pain management wait is 2yrs at least. I’m currently only taking ibuprofen and codeine at night but tbh it’s not touching the pain.

I don’t know what to do, I’m not functioning day to day, I spent my time in bed or on the sofa, I just feel useless. I’ve put so much weight on, I was always really slim and reasonably fit now I can barely move.

i feel like I’ve just been given this diagnosis to shut me up and so they don’t have to do anything else. I’ve had no scans or anything to rule out anything else causing the pain, lots of my symptoms over lap with other conditions like MS and I feel like how can than rule out its not that or something else without even seeing me 🤷🏻‍♀️

i just feel fed up and let down and with no where to turn to help.

Comments

  • chrisb
    chrisb Moderator Posts: 455

    Hi @alleyjayne80

    Welcome to the versus arthritis forum.

    Well you’ve certainly been though a lot over the past seven years and you’re still searching for answers which must be incredibly frustrating.

    The symptoms of tingling, pins and needles, numbness and pain your hands are indeed symptoms of carpal syndrome but this has been ruled out.


    Having tried numerous medications for pain relief without success leaving you unable to properly function must make everyday life very challenging.

    Members of the forum are a very sympathetic, knowledgeable and welcoming group so I hope that they will be able to provide you with some advice on what to do next.

    I hope that things take a turn for the better for you and that you can find a way of bringing forward your physio and pain management appointments.

    Best Wishes

    ChrisB (Moderator)

  • Sharon_K
    Sharon_K Moderator Posts: 376

    Hi  @alleyjayne80

    as Chris says it looks like you have been on a very long journey already with no real conclusion. You might find this link useful

    Would it be possible to ask your GP to refer you to a rheumatologist? Then you may be able to confirm what you GP thinks is the problem. The advantage of this would be that your rheumatologist will then be able to start a treatment plan for you and be able to see you regularly. Sadly it can takes ages to get a firm diagnosis. Meanwhile it is very hard for you, so just take one day at a time and you could try phoning our helpline on 0800 5200 520

    Best Wishes

    Sharon

  • Thankyou Sharon. My GP has told me there is no point in a referral to a Rheumatologist as all they would do would be to put me on the list for pain management and physio which the GP has already done. Apparently as I’m now diagnosed I don’t need any further investigation into my pain as it is ALL put down to “Fibro pain”?? This is why I feel a bit fobbed off as how do they know without ruling out other things? I know my bloods have never shown any inflammation or infection but I’ve not been physically examined, I’ve not seen a GP in over 3yrs and I was living life ok back then, now I spend my days in bed or on the sofa as I can barely move.

    I have taken steps myself to try and help, I’m taking Magnesium and Vit D and Turmeric supplements, although I’ve not seen any positive effects yet. This week I start a 12wk programme at the gym to get me back into exercise as I really miss it and felt it helped previously but I’ve not moved for so long I’m worried about over doing it and injuring myself so I’ve joined a 12 wk back to the gym programme where I will be carefully monitored and given a schedule to follow.

    i just feel really let down by the Drs, it’s so stressful just to even get to speak to one, and then when they don’t listen and just dismiss everything you say it’s frustrating.

  • Jona
    Jona Member Posts: 393

    Hi @ Alleyjayne80

    It’s horrible trying to get answers when you feel so poorly all the time when you feel that no body listens I’ve been through it all and the toll it’s taken has been pretty high not just on me but my family I found some drs Pooh Pooh fibromyalgia as a label when they don’t know what’s wrong and some that say it is a mental health problem hence anti depressants yes i was given them first they didn’t work as like I kept saying I’m not depressed so why would they work, I spend most of my time in bed as I’m so tired all the time I’ve had bloods which show high inflammation had scans and X-rays all show osteoarthritis in nearly every bone worse is spine and hands started this at 44 I’m 62 now and still fighting to find out I would say it would probably be cheaper and more helpful if a person is given a full body scan to rule out certain things but I think the govt restrictions on costs are tying drs hands

    I sympathise with you but you need to keep pushing I’ve been insulted and ridiculed was once told oh your a serial attender my answer is find out what’s wrong with me put it right then we can all get on with our lives but nearly 20 years and I’m still trying, dealing with pain all the time is very tiring but if you read my it’s in the news I exercise till pain allows and do mindfulness exercises but it doesn’t stop the pain

    Stay strong and be kind to yourself 😊💐

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