Please please help can stand anymore

Hi all I have been on here before with my illness and there was a lot of support things have got worse and just don't know what to do

Last December I started with burning in tummy that spreaded all over with having burning,pain morning stiffness, tiredness, insomnia, muscle twitching and cramp, limping about and my arm feels like it is broken.

My parents payed to see rheumatologist privet and he says fibromygelia is the closest thing. I had every test under the sun blood test scans, the only thing was a full spine test and to see a neurologist.

I had my full scan and the consultant that specializes in MRI scan said a dieses called scheurman's diese but the problem is my doc said that it is v rare for a a 32 year old lady to get this as it is a young boy age 12-16 teenagers that develop this, so we have to get to bottom of why I would have this. My doc said he dose not think its this that is causing all my symptoms as its crippling he dose still think fibromygelia but has said it is a worse case he has seen.

I have been doing a little research and osteoporosis indecates loss of bone mass as scheurman's is a loss of bone mass as well as curve in the spine where your shoulders end up bending forward and your hight decreases.

I am waiting to see neurologist but that is not till Dec 13 I am getting worse I could not even get out of bed this morning my legs went num I can't use my arm I am just so poorly I have ulsers in my mouth fingers feet hurt pain stiffness and flue like symptoms all over can't sleep I keep doing really strange things forgetful all the time

Could this be oseoporosis or a nerological condition please help any kind of advice will help

Take care thankyou for reading

22 Replies

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  • Dear sparkle blue

    It is so sad to read what your going through I'm so sorry your so unwell

    I personally thing you need help much sooner than dec

    Have you thought about calling you DR out and telling the dr that you can't cope with the pain . You could even go to a&e and tell them you can't manage at home please tell them all your symptoms . Is this something you would or could think about love , I just think it's awful that your suffering to this extent love squeak xx

  • Hi thankyou for your nice message 4 months i went to a&e was not as bad as i am now but bad enuff and cause bloods cane bk normal thay sent me home i said cant u help what is going on with me thay said that at a&e thay treat what thay came in for i went in cause i started having lots of pain in my leg and thay said sciatica. And i am not keen on my doc but u are right i cant go on like this i am just passed it all and i think ill be even worse in dec am actually scared all these symptoms especially my legs. Thankyou again xx

  • Oh sparkle blue don't thank me I'm just worried about you . I know you will not be able to go on like this all I can say is I have waited for appointments and sometimes if you ring the secretary of the consultant at the hospital the will try and move it forward. A & E do treat acute symptoms however if you can't manage on your pain relief they may keep you but you have to be strong and tell them you must stay in which when your in agony is very hard to do . Unfortunately the proper way is to call 111 tonight or your GP tomorrow and insist on a home visit you need them to speed up this appointment . It's so frustrating cause if your were an inpatient the consultant could see you . Sometimes I find it so hard cause I have been where you are for different pain and it is so very difficult . I wish I could help you sweetheart I truly do . I know how you feel and I hope the other wonderful people on this's site can give you better advice . If I could I would ring 111 now and insist a dr comes to see you tonight . Lots of love squeak xxx ps I am bossy it's just so unfair that in this day and age your in agony with no relief xxxxx

  • Hi, I agree this amount of suffering is unacceptable. Do call out your GP, you need to be in hospital .So sorry you are suffering like this.If it is Fibro there is an excellent Health unlocked Fibro forum.Some of your symptoms such as the numbness sound more neurological than muscular. Do let us know how you go on , sending a hug ., kim x

  • I wouldn't like to guess as to what your symptoms might indicate but sometimes tense muscles are responsible for even numb sensations.

    Hasn't your doc prescribed any pain relief to tide you over until your appointment?

  • Hi ppl I spoke to mum and we have just had a big fall out i couldn't hardly walk to her room she said we been to hospital that will just send us home I said no I have to talk with someone she said I need rest I can't sleep I also said you have to be forceful with these things as you can't get anywhere. She can see I am really poorly but dose not want to go to hospital to get sent home again. Hate my life I just don't know what to do ?

  • There is some good advice you have been given above. Speak to your GP surgery and ask for a home visit or telephone call from your doctor. The surgery will be on at the moment do ask for doc to ring you back between patients.

    Please say what pain relief you have been given.

  • Hello thankyou for this ,Sorry to you or to gp i an on termodol 50mg 2 tablets 4 times a day gabipentan 600mg 4 times a day x

  • Morning sparkle blue

    How are you feeling this morning ?

    I have been worried about you

    Your mum is probably very stressed it must be so hard seeing her daughter in such pain

    I do so hope you both feeling a bit better

    Love squeak xxx

  • Hi i am exhorted today my arm hurts and my right leg not both keeps going num my mum has been my career for last 6 months i have my own place with my girl but cause i cant manage we are prity much living at mums ive got no life my mum has been fantastic i have decided to ring the docs and make a telephone call apointment with my doc i have also rang neurologist department and thay have no sooner apointment. It takes me all my time and strength to write these and make these calls but i know i need the help, how to you stop yourself from been scared about your future and illness, i am so worried its something bad.

    thankyou all for your wonderful advice xx

  • It is understandable that you are frightened. Every one on here has lived with total fear at some point during the pain journey. It makes the pain worse as all the muscles tense up and adrenalin courses through the body. I hope you have now managed to speak to your doctor. Try to relax, how about a hot bath for starters?

  • It all sounds dreadful and I wish i could give some advice, but can't. The only thing I would say is that 3 months ago I was in such absolutely agony I called the doctor out to my home (first time ever - I'm from the era where you don;t bother the doctor!) to be honest, it was the best thing I could have done. He immediately helped with my pain, and ever since I have had lots more attention, and am trying to sort painkillers, going off to rheumatology, etc......soooooo DO ring for your doctor to make a home visit.....insist that you can't go on living with all this pain. .....good luck . My thoughts will be with you.

  • So Sorry Honey!!! Sounds like Fibromyalgia, but could also have some other health issues along with it. So many other illnesses are related with fibro. If I were you I'd push to be seen at a pain clinic. You shouldn't have to suffer that long!!! They could help you at managing your pain levels and are really good at working with you to find the right combination that works for you. Hope this helps sweetheart!!! xxx Mitzi

  • This symptoms also sounds like anxiety symptoms, also ask your doctor if it possibility could be anxiety causing this problem, anxiety effects the nerve system and cause numbness and numb sensations!

  • I'm 16 my back hurts and I feel numbness in my left hand and leg I don't really think I have that disease your doctor's thinks you have, my back does not "come out" like the pictures i have seen and yes I also feel like I have fever , it's all symptoms of anxiety ! Go to anxietycentre. Com it shows all the symptoms u need to know ! So stay positive u will over come this !

  • Hi where shouts is the anxiety venture? Thankyou for your message and i am sorry you are having horable symptoms to i feel for you x

  • Hi everyone thankyou all for your lovely messages and i am sorry you are all suffering to.

    i rang the doctors today to make a telephone apointment for after lunch time i waited till 3pm today and rang bk the receptionist said it will be tomorrow now after lunch, i am that ckoae to changing my doctors as i know few who go to the other practice in Richmond and said the doctors are wonderful its always good to get a second opinion. I just think docs don't lisson.

    anyhow i know is more than likely to be fibromyalgia as the rheumatologist said it is more than likey but i have to have further test but what i am worried about is the mri results and it coming up as sheurmanns dieses and the doc said it is abnormal for a lady my age to get this. Its a boy at 12-16 that is happens to. IM just all over the place. Last night could not sleep cause of pain my legs are still suffering and i am just past meself the doctors are crap

    thankyou all fof been so supportive xx

  • I had Scheurmans disease as a teenager but the MRI scans now still show it is evident, but doesn't mean it's active, it is to do with the shapes of the vertebrae which are a more squarish shape. Hope that helps.

  • Hi thankyou for this maybe I had this when I was a teenager and only pick it up now due to my underling illness and had to have MRI on my spine. So maybe the scheurman's has nothing to with my symptoms and only found it by chance do you think that's what could have happened? As it is rare for my age to develop scheurman's. X

  • Try Ldn (Low Dose Naltrexone). I take it for Multiple Sclerosis. There are patient interviews on the Ldn page

  • Hi thankyou for this but where can I find Ldn page ? I'm sorry you have ms it must be hardx

  • The community is called 'Ldn Research Trust' and there are interviews telling how Ldn has eased symptoms and pain. It may be helpful to listen to. It saved me :) Look into it

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