This is my 1st blog, please can anyone give me a bit of advice? x

Hi, i'm 38yrs, live in Kent with my hubby & my lil boy who's 3 yrs old.

I've had gynae probs since early teens, IBS started in late teens, then neck condition reared it's ugly head at about 22yrs. Neck kept goin into spasm, head would end up on my shoulder. I saw GP many times, given lots of diff pain killers, then finally referred to specialist, but by time appt finally came, neck had eased up again! She basicaly said, well it doesn't look like there's anythin wrong with ur neck! So i said "why would i take time off work & spend loadsa money i don't have on an osteo if i didn't need to!" With much persuasion finally gave me x-ray & when results were back she said "nothin's wrong with u, just as i suspected" & told me i was wasting her time when other people needed these appt's!! So lost all faith in NHS & continued usin private chiro's & osteo's whenever neck flared up.

Then at about 28yrs knees & lower back started to cause terrible probs as well as neck, & ended up bein off work for about 4mths, unable to do much at all. Saw rheumy (thru Bupa which i got from work), he told me it was nerve damage & sent me for physio with Bupa physio, eventually after tryin a few diff t/ments, she did acupuncture, which was tough coz i'm terrified of needles! But it did help & got me back to work cpl of days a wk at least, but had to have a session once a week for it to keep workin & as my year's Bupa outpx coverage for yr was all used up, couldn't afford to continue with private physio. So back onto NHS & had to be referred to rheumy b4 they'd refer me for physio!! So guess what, ended up seein same rheumy on NHS as i'd seen on Bupa & he was like a diff man on NHS -rude & grumpy! Told me he'd already told me i've got nerve damage & just referred me for physio at local hosp, but waitin list was huge of course! In meantime was back off work again. Anyway physio dept gave me some manipulation t/ment, then put me into their inhouse gym/hydro programme, except during my time i only got 1 hydro session, coz pool was reg having probs! But gentle gym sessions did help to build my strength back up a bit & got me back to work again, gradually buildin up my days.

Then spent yrs goin thru flare ups here & there, then they got more frequent, so had cpl more physio referrals again, but was havin so much time off work coz it all took so long, that i decided i should try a chiro again & 1 had been recommended to me. Best thing i ever did, he was fab! He did x-ray of neck on his archaic machine, which cost £20 & within 10 mins told me exactly what was wrong, that i'd got cervical spondylosis & said he couldn't believe that this had been going on for 10yrs without diagnosis! Soooo wish i'd found him sooner, he gave me confirmation i wasn't mad or lyin & all for £20! He said i should go straight to doc & demand an MRI to obtain an NHS diagnosis. Which did finally happen, but by that time i thought well what bloody diff does it make, they've not helped me much b4! Saw an orthopaedic consultant, who said was very rare for s/one my age to develop cervical spondylosis & that he'd consulted with cpl of colleagues & they didn't think that operatin on s/one so young would be right course of action, as there were too many risks. So decided i'd stick with my chiro, even tho couldn't really afford it, but we managed to get it down to 1 session per mth, but that was keepin me in f/time work & if i had bad flare up, i'd go for an xtra session after work & half the time he wouldn't charge me for xtra sessions.

Then had a really bad flare up which just seemed to be gettin worse even with xtra sessions, & was off work again. So we started tryin diff techniques, but nothin seemed to be workin, then my chiro became v.ill & v.sadly passed away. Then i just got loads worse, was referred for physio again, but nothin seemed to be workin. That was in 2007 & ended up havin to leave work altogether & here we are now without much change, apart from gainin probs with wrists/hands as well. I also had my son 3 yrs ago, but that then gave me depression & incontinence to try & deal with, both of which i still have now. Then in the last yr my ankles & feet have started givin lots of probs too. But apart from my neck i still don't have a confirmed diagnosis, i also saw anotha rheumy a few yrs ago at Kings College hosp who did the tender points test & said that all my symptoms completely matched fibro, but i didn't have full amount of tender points required for her to diagnose it, so she could only diagnose chronic pain?! So my hubby & i were sent away again not knowing where we stood, i was just so exhausted & at the end of my tether, i gave up again.

Anyway coz it's all got worse in the last yr, i've been referred to anotha rheumy (more local this time!), had 1st appt a few wks ago & she seemed pretty gd. Asked endless questions, examined me thoroughly, but then said she'd run outa time to do tender points, coz they were runnin 50 mins behind! Not my fault i thought, but didn't have btl to say anything! Referred me for physio for few wks to try & loosen e/thing up & get me bit more mobile again & said she'd see me again, i'd get an appt thu post. So i'm still left with no diagnosis, strugglin to look after my lil boy & deal with day to day life, plus feelin as if most people think i'm a fraud & terrified i'm gonna lose my inc.benefit after they read my appl for ESA. Sorry for wafflin on & on endlessly, it all just came spillin out! Please can anybody give me a bit of advice, i feel lkie i'm really losin my mind now!! Georgina xx

4 Replies

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  • hi Georgina many of us have found it takes years to get the fibro diagnosis, at times it seems to be ruling everything else out then fibro is the answer , YOU are NOT a fraud , many of us at one time or another have felt the same way. if you read other posts on here you will see the wide variation in symptoms that we have and the chances are you are a sufferer too. How on earth do you manage to take care of your little one ? because you have to i expect, warm hugs and take care x

  • Hello Georgina and welcome to the blog pages. As will see many of us suffer in similar ways before we are eventually diagnosed. We know you are in no way a fraud ! I have severe fibro mixed in with stenosis of the spine, arthritis, to name but a few symptoms managing them is hellish. My daughter has CFS an a 18month old to care for so I know just how very difficult it is for you.

    At least it sounds as if you have found a 'rhume' specialist who is sympathetic so keep going to see her and Good Luck x gins

  • Hi Georgina, So sorry to hear what you are going through. I sympathise with you as I also have Cervical Spondolysis and I know how very debilitating this can be. I had all sorts of physio treatment and within time it did help but still have some probs now and I have a regular massage to help with this. I was diagnosed with Fibro just over two years ago and the Rheumy I saw wasn't very nice either, he was very grumpy and rude and didn't explain anything to me just said it was Fibro which mean nothing to me and had to look it up on the internet. I have tried acupuncture which did help for a while but as you say it's expensive to keep having. I have also tried Reflexology but this hasn't helped me at all. My GP has now put me on a short course of steroids (Prednisolone) which have helped with the pain but I feel really sick and given me bad headaches, can't seem to win. I too live in Kent and if you need to chat please get in touch. Take care, Sheila x

  • Hi Georgina, So sorry to hear about your horrible health problems. I do not have fibro as badly as some and was lucky to get a diagnosis early, that plus the fact I am now retired has meant I do not suffer as much as many fibromites. Having said that your post brought back all the horrible memories of feeling a fraud, hypochondriac etc. My diagnosis led one person to refer to it as my imaginary disease. He now wonders why he no longer stays with me at weekends!

    Is the tender spots the only test applied? I did not think I would 'pass' this but a chiro did it without being aware and i definitely did. still think it is a very limited test.

    Loving thoughts xx.

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