Still no diagnosis

So I have been awake since 3 am, unable to sleep as the pain in my hips, shoulder and back is just so bad. probably the worst it has been in a long time, and I just can't do anything to make it better. I can normally pin point why I am in so much pain, i.e it is usually when I have done too much the day before, but I am not really sure what has set this off today. There is no position I can find that does not have me in agongy.

Anyway I am really just on here as I can't sleep and I am frustrated at still not knowing what is wrong with me. To top it all off I got a letter from the hospital yesterday saying my latest scan results have all come back clear as with all the others, so there is nothing further they can do for me. So they are saying there is nothing wrong with me, yet I am sat here nearly in tears because of how much this all hurts, and then I of course will be shattered all day as I have been up since 3am unable to sleep because of the pain.

I guess this is just more of a rant than a quesion, but just feel like I don't know which way to turn now. I know I have to go back to the doctors and try and get a diagnosis, but just feel so let down, and the fact that nothing is showing up, makes them talk to me like I am making it all up. Yet I am in so much pain daily I don't know how to get this across to them and make them believe me, as to how much it actually hurts and affects me. I just wish there was a way to prove the pain, but I only have my words to describe it, and I am obviously not doing a very good job of it.

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  • Just been reading through some of the posts on here, although I haven't been diagnosed with Fibro yet I have many of the symptoms. As I was saying I can't figure out why I am so sore much worse than usual as I haven't done anything that normally sets it off. Anyway just read on one of the posts that stress can make it worse is that true? As although I haven't done anything physical to set it off which is normally why I have bad days I have had a really stressful couple of days with various things going on within my family. So I am wondering if that has caused me to be in ths much pain. Seems strange but it would make sense in a weird sort of way

  • Hi Lilian,

    This forum is a great help.

    I went through alsorts of tests! 3 MRI's of diff parts of body and brain. Taken over 2 yrs!

    The only results that i got was of my neck with MRI that showed what was wrong and my symptoms are both sides and not just one Which apparentaly to have operation my Neurologst and neuro surgeon said symptoms should be one sided?!? Hmm confused me so mych but cannot do op due to wide spread issue and the fact i am a 90% risk patient. ( they wrk on %) so have to put up with it and i got another diagnosis too which now makes sense.

    It does not mean at all its all in your head as that is how many of us feel for a while

    Until you have had everything done that shows negative.

    Took mine a long time.

    Something without you realising triggers things off like a light switch.

    You keep persisting and annoying your Dr's as thats what they get paid for!!

    If your suffering whether they can do anything or not they can listen!!!

    Keep a diary aswell as i have.

    Weather, flares, how long something lasts from seconds to months/yrs

    As you can look back at it and you can show Dr whats happening and when.

    I printed out things for Brain Specialist which would takes minutes to read out of an hours session which is 5 mins less of my talking lol.

    Its damp and wet here today and i am suffering and got a busy day helping my gran as she cannot do much only she does not know how bad i am!

    A smile and gritting of my teeth will do :-)

    Keep chin up and we are here inbox whatever we will do our best.

    Maybe you should get another opinion too if not entirely happy with one Dr.

    I see a variety in my surgery but end of day they all know whats going on.

    Xxxxxxxxsoft hugs

  • hello both .. I would encorage you to go back to the Gp there are many things that have to be rulled out before they will diagnose but the more information you have the better ..

    yes stress can make it worse so be kind to yourseld xx

    gentle dyslexic hugs

  • I requested being referred to a Consultant Rheumatologist where the necessary tests were taken, and the x-rays showed no degeneration in joints which ruled out Rheumatoid Arthritus. Hope this helps.

  • thanks for your messages. I have been to the rheumatologist, they have done blood test, xrays, mri's, and bone scans and found nothing, which is why they are saying there is nothing wrong with me. But the amount of pain I am in, it is not possible for there to be nothing wrong with me. Just frustrating as I am sure most people on this site know exactly how it feels. I guess we just have to find a way of getting on with it

    x

  • Try getting a body pillow I have a 5 foot one, it means that instead of my body taking the weight of half my body when on my side I am able to rest a leg and arm on the pillow, this also take pressure of the arm and leg that would be hanging down as they stay at the right level, hope that makes if not let me know smiles and hugs xx

  • Thanks for that advice, at this stage I will give anything and everything a go if it means it might help ease some of the painxx

  • Can you give a small electric heat pad? I use one even at night,I got one from argos for about £20.00,helps a bit,I have been trough the same as you,but my g.p has given me steroid injections into my hips,helped for a few months,I take Co-codamol 30/500mg,Amitrypyiline 100mg at night,150mg modified release diclifenac,now I am taking 75mg pregabalin 3 times daily,the pregablin has helped loads,at night I was sleeping very little,have done for sbout 6 years.

    What meds are you on? Sandy

  • I am just taking co-dydramol, a few months ago I went to the doctor and said they didn't kill the pain really and was there anything else I could try and they wouldn't give me anything else. I have been on naproxen, but it didn't do anything. And been on amitrypyiline but it didnt react very well with me, so had to come off it.

    x

  • The best advice we can give you would be for you to see your GP. Explain all your symptoms and ask for a referral to a Rheumatologist or a Neurologist. Hopefully then you will have the usual run of blood tests, tender point test, be thoroughly examined and be prescribed the appropriate meds to help you manage your pain etc.

    It is part of the process I am afraid. We normally have to go through a range of meds to find what helps us best.

    It certainly sounds like you need another opinion as your GP isn't recognising your pain levels etc. Ask for a referral and fingers' crossed you will be on the right track. Wishing you all the best, take care. :)

  • Yes I agree,I had seen a rhumey as I had lots if bad aches and pains,my daughter has systemic vasculitis,my mum had RA and was confined to a wheelchair,I had cancer 2 years ago and had to have bone cancer ruled out, I had a complete bones scan,I had lots of blood tests,then I saw a rhumey who said I had raynaulds syndrome,syjorgens syndrome ,and said he could tell me that I didn't have lupus,but I may get it in the future,he sent me back ro my g.p and said g.p would treat my symptoms.

    I don't take anything for the raynaulds or syjorgens,it was my gp that said he felt I had fibromyalgia,he gave me pregablin to try,I feel it is helping a bit,sleeping better for the first time. in years,I would wake upto possibly 20-30 times a night with severe hip ,knee and back pain.

    Hope this helps.Sandy.

  • Get a 2nd opinion and ask to be referred to a rhematologist.

    I've got raynauds, HMS, fibro and carpel tunnel as my pain disabilities,

    my CPTSD set off my fibro when i was a teenager so ive had fibro most

    of my life.

    You have a right to change your GP and get a 2nd opinion. Will your GP

    prescribe anything to help with the pain? Im on gabapentin and it really

    helps with the nerve type pains.

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