Cannot get a diagnosis

Hi all, I have been suffereing for 8 years but cannot get a diagnosis, I would like your opinions of my symptoms.

8 years ago I suffered a traumatic divorce and spinal surgery to remove a prolapsed disc, all in the space of a few months. Ever since My health and general wellbeing has increasingling deterioted. Before my operation I was a fit, healthy and active 32year old, now Every day is a struggle. Almost immediatly after surgery I started getting sharp 'ice pick' headaches and confused thoughts, I constantly forget what I am saying half way through a sentance. Then I started having unexplained muscle pains in numerous areas, these have continued ever since of various severity. My dental health rapidly declined and my previous IBS flared up again.

My GP has done every blood test possible, I have had muscle and nerve tests, MRI's and x-rays, but still no diagnosis. I have changed GP twice in the hope that a new opinion may help.

Today I suffer continously from:

Fatigue, muscle pain and weakness, mind fog, twitching muscles, stiff fingers, pains at the back of my head/neck, IBS, bladder control, balance problems, diziness, lack of concentration.

I have recently been on holiday for the first time in 8years, whilst away my symtoms noticably decreased. The IBS stopped, I didnt ache anywhere near as much as usual and I managed to stay awake all day, but as soon as I returned home the usual symptoms returned.

I am at my wits end living day to day with my symptoms, not knowing if it is a condition or just unrelated symptoms, or if there is any medication that can help, or therapy etc.

My GP just tends to send me for more blood tests which come back normal every time and I am back to square one.

If any of you can relate to my sysmptoms and can advise what I should do next, I would grately appreciate your opinions.

Many thanks.

7 Replies

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  • hi, I'm new on here, but I can totally understand what your going through.

    Mine started over a yr ago..I was fit and active, I loved my job and was a healthy 42 yr old. Then out of the blue I was diagnosed with breast cancer, went on to have 3 ops and radiotherapy, then split with my partner of 23 years, and I worked full time all the way though it. I was just getting my life back together when I started to suffer with extreme fatique and muscle pain, I was told I was anaemic and was treated for it but the pains got worse and would waste days napping, some mornings I can barely function and feel like I have flu, the pain varies from stabbing pains to burning sensations, I cant get to sleep at night even though im exhaustedI get headaches,memory loss, can forget what I'm saying in mod sentence.Its now affecting my job and I can't remember the last tine I worked a full week ,My life revolves around work and sleep and i spend most weeks at doctors or explaining to my employer what's wrong with me and why Im having so much time off. Its so frustrating when most people inc ny doctor thinks its all in my head.

    I also was tested for just about everything and blood tests always came back negative.

    I'm now worried ill lose my job, as a single parent

    Its took over a year, but my doctor has finally admitted hos baffled and referred me to a rheumatologist next month.

    I was researching fibro after 2 work colleagues thought I had the same symptoms and I now believe they were right, but am finding it so hard to get a diagnosis..

  • I does sound like fibro through seeing a rheumatologist got me the diagnosis of fibro he did the point test and ran bloods to rule out other things once they came back clear he was happy to say I have fibro he said that a lot of fibro patients are referred to rheumatology as the symptoms are similar hope you find an answer soon x

  • Really does sound like fibro why not suggest it yourself? a good g.p should know all the bloods and ct,s and mri,s wont, show anything, its just common sence after every avenue explored.. For yourself try a couple of visits to local pool that has a Jacuzzi and soak for a while see it make you feel better, then if that works try asking your g.p to refer you to a physio and ask the physio to try you with some hydrotherapy I swear by thse 2 therapies after 14 years with fibro.+

    ...........................

  • hi Gee

    not able to offer any advice as to where to go next but associate with your story.My symptoms started in 2012 and progressively worsening since then.like you all bloods appear to be normal as do scans but ive not had ct/mri scans since 2013 and wont now as they "cost too much money".

    repeatedly get "you have health anxiety/mental health issues"because i am trying to find answers for myself and "going round in circles"when they keep bringing up the same comments -and i respond the same way -we all get fat as we age and its all pysycholigical.

    i do feel sometimes when out/away from home that things arent as bad.

    my original gp once said there are conditions that are sero negative ie arthritis so i wonder if other conditions dont show up via bloods/scans.heard/read so many times of scans not being conclusive.drs dont accept this despite evidence.

    seeing other gp's doesnt help as they all "stick together" had so many arguments with dr over my symptoms that arent in my head and cos scans dont show-doesnt mean you dont have symptoms.as has been said on tv-its not all about "paper results" but the patient who knows their body,

    good luck i hope you get a diagnosis soon.i ve had Pagets and Myositis mentioned to me.put them to my gp but dismissed.

  • So sorry to read your post and welcome to the forum. I don't know whether you have had a chance to have a look at our mother site Fibromyalgia Action UK as there is a patients booklet on there. If you look so many of your symptoms mirror what is on there.

    Manyof us were very active, holding down important jobs and doing gardens and housework quite easily. Then some life event seems to tip the body out of balance and we has fibro. It could bean op., family illness, divorce etc. So many have spent years having to go to innumerable doctors and specialists trying to get some sort of diagnosis. Many like yourself had IBS before they were taken ill it seems to be quite acommon factor and many like myself have other health problems as well.

    Diagnosis seems to be by a doctor or specialists who actually believes fibro exists and eliminates other illnesses such as RA, Lupus by doing blood tests which come up negative. Hope this helps.x

  • Hi Gee74

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    I am so genuinely sorry to read that you are suffering and struggling in this way, and I sincerely hope that you can get a diagnosis one way or the other. it may prove beneficial to ask your doctor for a referral to a Rheumatologist, whom would usually in most cases (but by no means all) diagnose Fibro.

    There are many other medical conditions that share many of the same symptoms as Fibro such as MS, Behcet's syndrome, Complex Regional Pain Syndrome (CRPS), or Myositis that dolphin33 as had suggested. It can take a while to get a Fibro diagnosis that is why many sufferers ask for a referral to a Rheumatologist. They will quite often perform what is termed the ''Tender point test.'' I have pasted you a link to the *WebMD cache on this below:

    *WebMD - Tender Point Test:

    webmd.boots.com/pain-manage...

    I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • deffo sounds like fibro why not suggest it to your doc?

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