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Getting answers but feeling a bit lost

Posted , 6 users are following.

ellieP123
ellieP123

Hi all. I haven't been diagnosed, but it is suspected. Everything started just over a year ago, i had severe upper abdominal pain, and was in and out of hospital, back and forth from GP, scans, endoscopy etc initially thought gallstones, then ulcers, but nothing came up with any test.

I eventually put it down to stress, had lost my dad six months earlier, was having terrible trouble with stress at work, and suffering depression. I gave up my job in hope it would resolve issues.

then the pain and numbness in my right hand started, i was sent for nerve conductivity tests, all clear. Refererred for physio, just seemed to get worse. Abdominal pain still there but i was trying to just get on. 

Night pain then started, ribs and hips excruciating pain waking me every night. My hips and legs on a morning are terrible, have to hold onto wall to get out of bed etc. Taking me ages to get going, aching and stiffness. 

Persistant migraines and headaches, my arms and shoulder blades ache constantly, and have now developed a cracking neck. 

Just after Christmas, started with what i thought was an ear infection in my left ear. Visisted GP to be told i was probably getting a cold told to buy ear calm. So i did, but next 3 weeks of constant earache with pain radiating up my face and skull, went back. This time, got a GP who actually wanted to listen. My exhaustion too by this point was getting worse. I felt like i was going crazy and broke down in tears whilst spilling it all out how i was feeling. 

He suspected several things, including mentioning Fibro - i'd never heard of it. Prescribed anti-depressants.  Did bloods on Thursday last week, got a phone call on friday evening, all bloods clear except Folates are very low. Got to go back on Monday to sort that out. Nearly passed out in Tesco today, legs just went to jelly, feel dreadful and slept all afternoon. Pain seems to be everywhere at the moment.

I'm lucky in some ways, seems like a short journey compared to many, but saying that, i still don't know for definite what is wrong with me but my own research over past few days, my symptoms seem to fit fibro. Just hoping i get some answers soon, and some help to manage this. Feel a bit scared and lost and in a bit of a fog.

Sorry for long post!!

 

1 like, 9 replies

9 Replies

  • sarapainfree
    sarapainfree ellieP123

    Posted

    hi sorry to hear your having a horrible time with everything and that u lost your dad stress can bring these conditions on I hope u get some answers soon iv been suffering for two years and got dignosed in November 2015 been left that lo g I know have to use crutches to help me walk it's affected my memory my daily life has become affected I'm currently off work on and off all the time been referred to a pain clinic starts in march just know u are not alone and we are all here to talk too make sure u push for test etc don't let them fob u off x
  • sammy-jo_40648
    sammy-jo_40648 ellieP123

    Posted

    HI I've have read this my husband has the same problem he's had it for years only found out he was dignosied 12 years ago it's a joke he keept going doctors with pains thay just gave him cocodimaol and thay told him last year he has fibromaigla he suffers with memory and has a hard time with it he can't sleep can take anti depressants is there enything he can do or I can do to help it's hard for him as he has a peronality disorder and paronia disorder meny thanks sam
  • kaz_40
    kaz_40 ellieP123

    Posted

    Hi elliep123 How you describe things sounds very much like fibro.It  took 10 years and many tests seeing every specialist you can think of blood tests glaore. finally in 2014 my gp refered me to see a rheumatologist who after more tests diagnosed fibro. Your gp needs to refer you to a rheumatologist its they that diagnose fibro.Fibro affects the entire body fibro is based on pain and pain can be any where in our body, fibro also throws many different symptoms at us earache sore throat dizzyness headaches migrains balance issues numbness pins needles tingling these are just a few. once you get a diagnose your gp should give you some pain relief. fibro is trial error as to what suits us and what doesnt. fibro affects each every one of us differently as to the severity of it and how long the different symptoms last. we are all different fibro affects us all differently. take care
  • Sorrentogirl
    Sorrentogirl ellieP123

    Posted

    I can sympathise with you.  Its great your doctor is listening.  I've given up, doctor just listens, i've been to rheumatogist, Ive have no alternative but to work full time. I need to get up an hour earlier than normal to get legs moving.  Its such a struggle, i just live on co codamol as hey relieve pain a bit but its just like one big nightmare but i read these posts in case there are any good suggestions

     

    • sammy-jo_40648
      sammy-jo_40648 Sorrentogirl

      Posted

      Keep bugging the doctors u can't work with that condition that's not fair my husband has fibromaigla I no how u full it's slowing him down by the pain he's only 38
  • ellieP123
    ellieP123

    Posted

    Thank you so much for your replies, they are very much appreciated and has made me feel a bit more relaxed this morning. 

    I think i will go back to GP armed with lots of information tomorrow. I am worried he may have become fixated on the low folate levels, and will blame everything on that, but i think i could use that as leverage to get further investigation.

    Thank you all again, i wish you all the very best. x

     

  • sammy-jo_40648
    sammy-jo_40648 ellieP123

    Posted

    Hi sorry for your loss I no its hard keep pushing the doctors I had to for my husband he thought he was a pain keep going down for years complaining about the pain he keep getting doctors flog him off it was only till I said this is crazy what is going on he's in so much pain no one is listening that's when he got told he had a dignosied of fibromaigla 12 years ago never got told till 2014 what a joke

    Keep pushing them don't give up u will get the right help stick with one doctor so thay will get to no u we have its so much better cos thay no your condition and about u with another doctor thay will just look through your notes it's a nightmare good luck I hope u get the help u need it's not fair my husband has been on co-codemol for 12 years

    Wish u all the luck stay strong keep pushing

  • nigela27
    nigela27 ellieP123

    Posted

    Hi Not diag but got a lot of symptoms. now I ahve tender swollen group of lymph nodes in groin. had ultra sound. I do ahve ibs and coeliac. also a fibroid and benign kidney cyst! lots of back hip neck  pain too

    So worried about the tender lymph in groin..is this common with fibro?

    • ellieP123
      ellieP123 nigela27

      Posted

      Hi Negela27, I haven't had tender lymph nodes in groin, but do have one at the base of my neck which swells and gets tender, always been told its nothing to worry about, body just reacting to things. But if i were you i would pop to see Dr just to put your mind at rest. I've suffered with lipomas over the years, had one attached to my optic nerve removed 5 years ago, and have one in my shoulder, along with a large cyst which causes me pain. So i'm wondering if they are related to fibro. I'm seeing rheumatology nurse next friday, so hopefully will get my referral to rhuematology at hospital to get somewhere with diagnosis. 

      All the best to you, hugs x

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