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are all these progressive symptoms just part of fibro

Posted , 7 users are following.

vicky89033
vicky89033

I need advice before i see my GP yet again. i will try to keep this as breif as possible. 2 years ago i was diagnosed with fibro but can honestly say my symptoms were nothing compared to what i am suffering now. 18 mths ago i had what was belived to be a 3 wk virus since then things have got realy bad more so over the last 5 mths. i have been very ill and in scale 10 pain every day for 5mths my doctors have done so many blood test and scans/test no one has found a reason yet. my symptoms are- headaches and migrains affecting vision,balance problems,facial pain,nerve pain-numb,tingling,stinging(arms,hands,legs,feet,neck and shoulders,sinusitus,jaw and dental pain,painfull eyes,fullness in ears and tinitus,gastric problems,difficulty swallowing(lost 15kg weight now under weight and mallnurished),rapid heart beats,low blood pressure,reocurring oral thrush,sore tonge,mouth ulsers,feel weak but not tiered,pains move around body only recently joint pain in fingers mainly muscle pain including spasms and twithing,constant mucus clearing from throat,glands in neck,breast,armpit and groin areas swell,pains in ribs shoulder blade area. i could proberbly add more its been a horrible time dealing with all this its ruined my life and is getting worse each month. my doctors are sick of seeing me and dont seem to have any answers or be able to help me. please could anyone give me advice and point me in the right direction to get help. im sure this is more than fibro alone as its constant and progressive thankyou

1 like, 16 replies

16 Replies

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  • gill50535
    gill50535 vicky89033

    Posted

    Hi vicky. iv'e had/got all the symptoms you mentioned and had tests/scans seen several specialists all with normal results and told it's fibro.

    I was very worried especially with the swollen glands in my armpits but with every test negative/normal it has all been put down to fibro and it took me over 2 years of testing to get that diagnosis whi gradually getting worse.

    if you feel your symptoms are not just fibro then keep fighting and hassling doctors till you get a diagnosis you feel is right.

     

    • vicky89033
      vicky89033 gill50535

      Posted

      thank you for your reply think i will try one more big push to see if doctors will refer me back to see if its possibly autoimmune going to have to except its all fibro otherwise and try to get support and pain relief thanks
  • ChronicGirl
    ChronicGirl vicky89033

    Posted

    Hi Vicky

    Sorry to hear you are struggling with so many symptoms sad I have 90% of the symptoms you mention too. I also have poked and prodded for 2 years with no diagnosis other than 'it's probably fibromyalgia'.

    All the medical experts I have seen seem to be puzzled, not very helpful and certainly not comforting when your life has been completely transformed for the worse. Most doctors don't even know what fibro is!

    Keep your head up, keep fighting and please post any updates you get so we can all help and support each other smile

    • vicky89033
      vicky89033 ChronicGirl

      Posted

      thankyou for your reply and support. you have 90% of the symptoms i have which ones dont sound the same as yours? what you said about medical experts not being comforting is true and awful i think if any doctor had said were sorry we cant find a reason and know your suffering but we will do our best to help atleast we would feel understood and listened to. i will keep you updated thank you  
    • ChronicGirl
      ChronicGirl vicky89033

      Posted

      The only ones you've listed that I don't have are a sore tongue, ulcers and mucus clearing. But there are others I have you haven't listed such as hypersensitive skin, stabbing pains in my shoulders, nausea and horrendous restless legs.

      In my opinion (based on hours and hours of reading medical papers and peoples own accounts of illness only, because let's face it none of the 'experts' I have seen have done this!) I think my symptoms are based on a disfunctional immune response to a traumatic injury which can be called fibromyalgia.

      When my symptoms first started I was in complete denial. I was fit and healthy before them. I carried on with full time work for over two years. But over those two years more and symptoms appeared and I found myself unable to cope with every day tasks and my mental wellbeing suffered. I don't know whether I was slowly working myself into the ground by not accepting what I had and dealing with it appropriately or whether the symptoms were progressive.

      The doctors fobbed me off with antidepressants and didn't even try to treat the symptoms causing my mental anguish.

      I have been saving up to see a private rheumatologist who is a little more savvy in fibro than the ones available to me through the NHS in the hope he can help give me back some semblance of life. Whether he says its fibro or something else I'm pretty much past the point of caring what I have as long as I know what is. It might do nothing for me but I have to try.

      Good luck with journey and keep us updated and I will do the same.

  • kaz_40
    kaz_40 vicky89033

    Posted

    Hi Vicky89033  Everything you have listed I have had,its all down to the fibro. I became ill 10 years ago I have seen every specialist you can think of countless blood tests ct scan MRI x4 bone scan xrays  lung tests heart tests the only 2 thing to show out of all the tests was low in vitamin d and arthritus in neck and lower back. Rhumatologist diagnosed me with fibro after 10 years of trying to find out what was wrong with me. After spending 6 months in bed and over in 2006 2912 2013 2014 and having to have carers come in and look after me. fibro can be mild or severe its symptoms vary in how long they last and they affect us all differently. Fibro in me has got worse since last year that Im now having to use a wheelchair. what you have described are fibro symptoms.Pain constantly in back legs headaches migrains tinitus get them all the time. all drs will do is give pain tablets to help with pain. Drs can refer you to a pain clinic cbt therapy accupincture and some areas can send you for hydrotherapy. My advice is get as much help support as you can and see if your area has a fibro support group take care
    • nikki92305
      nikki92305 kaz_40

      Posted

      this is me!!! i have had nerve test , muscle test, ct, neuro exam , blood test ... ect... done ... my neuropathy is so bad sometime and i have trouble gripping stuff sometimes... back pain, leg pain... ect its miserable

  • kaz_40
    kaz_40 vicky89033

    Posted

    I have found with my self fibro has affected every part of my body, Ive found with drs that when you go to see them about something 9x out of 10 its put down to fibro. fibro throws all different symptoms at us their are at least 100 fibro symptoms that you may or may not get. It depends on your body and how fibro affects it. Its a horrid condition to have and a daily battle. all we can do is battle on because as yet their is no cure for it.
    • vicky89033
      vicky89033 kaz_40

      Posted

      thank you for your reply it is scarey like you said 9x out of 10 doctors put something down to fibro and may miss something else going on. which i feel has happened with me i was diagnosed with fibro very quickly and wouldnt say at that point i was realy ill. if its only fibro its very progressive. i will try to find a fibro support group near me as i need to come to terms with this thankyou
    • kaz_40
      kaz_40 vicky89033

      Posted

      Hi Vicky89033 we go through different emotions with fibro 1st one is denial 2nd anger 3rd  grieving for the person we use to be 4 acceptance which is the hardest one. All we can do is take a day at a time get through it as best we can. with each new day we get through its another battle won. My advice is get as much help support as you can and aids to help you. fibro Ive found is progressive my mobility is very poor memory not good. Hey ho onwards upwards. take care gentle hug
  • mel77
    mel77 vicky89033

    Posted

    Hi vicky:

    I am sorry to hear that you are not doing good.  What might have started 2 years ago with fibro and now to the point having so many other problems, it is very hard to distinguish what has caused all these additional situations.  I know one thing is that you are right in saying that doctors don't want to deal with what you have because they don't know.  All your blood tests appear normal.  That depends upon what blood tests were taken.  It is very hard to narrow down one specific cause.  You mention you had a 3 week virus 18 mo. ago.  From then on, you have been getting steadily sick.  What was this virus and how was it treated?  Who treated it?  Were you on antibiotics and for how long?  I'm not a doctor and I cannot do any diagnosing.  What I am asking here is just some information that maybe I can give some sources that you can check out.  I have quite a few of the symptoms but not what you have.  Fibro was detected on me quite a number of years ago.  Over much time, I have been getting steadily worse with pain and all sorts of added problems.  Part of it due to my age as wear and tear of the body takes it's toll.  I am 76 going on 77 Apr.  I had 2 lumbar surgeries to repair my disks and neck fusion to repair my vertebrae and spine.  I thought that would solve all problems but it didn't.  Now I have spinal stenosis and damaged nerves.  I also had a nerve stimulator put in 2 years ago to help with my legs which I also have peripheral neuropathy.  Works on my legs but also hoped it would help with my lower back pain.  It didn't.  There were no promises that it would.  Back to you though.  I know it is very hard to find a good doctor who will listen and provide the proper testing to get to the root of your problem.  There really is no blood test that will detect fibro by itself.  I know that it didn't detect mine.  There are other blood tests though and a good doctor, especially a rheumetologist can prescribe these blood tests.  One I had was a SED rate which is sedimentation rate to check inflammation.  There are many others and a good doctor should be able to prescribe these tests.  You want to rule out any autoimmune diseases.  I don't know what type of insurance you have or if you are in the UK, then I believe it is quite different than in the USA.  I don't know what  your age is so I am unable to get a feel for what you are dealing with.  I am not asking for your age so I am not prying.  I just hope you can get to the bottom of this and start doing your research.  I wish you well and please let me know what is happening when it does.  Sounds strange, I  know but your welfare is your primary concern.  Wish you well and talk to you soon.

    mel

    • vicky89033
      vicky89033 mel77

      Posted

      hi mel thanks for reply the virus is a mystery and wasnt treated i just took my doctors word it was a virus ( sudden off balance,feeling weak and generly unwell for 3 weeks) some test have had results scope showed gastritus,breath test showed lactose intolerence,scan of knee showed slight damage to cartilidge and ESR levels always raised (25) in bloods im in uk so NHS treatment. im 49 years old but feel 90! thanks for your support
  • EarthaKitt
    EarthaKitt vicky89033

    Posted

    Same here! Plus many more. Fibromyalgia stinks. It's so frustrating! 😡💩

    just take one day at a time try and get yourself as comfortable as you can! Guaranteed we know more than probably most of the consultants. As we are the ones who have it!! Drives me mad when they all keep saying it's not progressive! It bloody well is! I've got three operations stacked up now in the next couple of months. It does feel like you constantly bothering the doctors I feel like I'm a bloomin hypochondriac! 

    Chin up though. Don't let it get the better of you. Then it's won. Xx

    • mel77
      mel77 EarthaKitt

      Posted

      Hi EarthaKitt:

      Thanks for agreeing with me as well.  That is what I do is to help people that lets deal with it as we are the only ones we can.   guess in a way we become our own doctors as doctors still don't know that much about it and write  you as a compaining or hypochondriac like you say.  I had some of them myself.  I think as individuals who is normal as normal can be out problems, then we should become our own advocate and learn all we can and find ways to deal with it ourselves.  I know it is hard but that is the way it is.  It seems that doctors really have no time for us as they get on with the patients who can provide money so they can do the things that the patients desire.  Of course these patients may have the money to feed them so why should doctors not treat them.  Beware of the doctor who calls you back week after week as they are just feeding on your conditions not really helping.  Personally, we don't know what helps and just spending our money needlessly.  It's not fair but that is the way it is.  When your GP refers you to a specialist, then they just shove it off to another doctor.  I am not saying there are bad doctors as I know I have been to some pretty decent ones who try to help but there are times they cant.  Then they refer you to another doctor who eventually refer you to a surgeon.  Thats a no, no.  You don't want to go there unless y ou  really have to.  I feel 3 opinions are in order for that drastic step.  Surgeons always want to do surgery because that is their bread and butter so to speak.  I bet there are a lot of surgeries not needed.  Sometimes, it can only make things worse.  I had surgeries like these.  Does any of these surgeries really help?  Some do of course but who knows what the long term outcome will be.  They don't have a crystal ball and beable to tell you fortunes.  There smile on their face when you accept and coerced sometimes is what they want.  Who knows how much money do they need for their next sports car?  Hey, they are in business and that is what they do.  So medicine today is big business in the USA.  If you have the money, guaranteed your doctor will have the nicest personality, spend time with you, and provide the treatment they feel is best.  Of course they are probably the best doctors in town and if you have to be hospitalized, you will get the best care at the best hospital.  These doctors mostly practice in these better hospitals.  Of course, don't get me wrong as it is not true in all cases.  Medicine here has changed from the very good to either fair or poor.  We are talking about today.  Doctors mindsets are different as technology has improved and computers today are used in medicine almost exclusively.  I can't count how many times I been at a doctor and from the time the nurse takes your history and then the doctor tries to pinpoint it, it leaves them no time to actually examine  y ou.  Sad but true.  Do you remember the show Dr. Welby, a TV series from time ago?  Hell, he would stop someone on the street, look at the patient to be and say you don't look good.  Come to my office tomorrow morning so I can look at you.  He always finds out that the patient has something wrong with them.  It's not fibromyalgia either.  I remember when I was a kid, the doctor would come to the house and examine me.  He usually had some of his medication there and give to you on the spot.  Forget about that today. 

      All I can say is this after I told you a long story.  Be your own advocate.  Look up information and see where you can apply it.  You will feel better after doing things for yourself.  I know it is not the easiest thing in the World to do and all doctors will tell you to do your own diagnosing is wrong because they will feel that you will do want to anyway and have no need for any doctor.  Doctors don't like you to do this and gets them perturb.  Oh yes, they feel that you having a lesser education than them, doesn't give you the right to do  your own self diagnosis.  I bet a lot of em detest these online finding what y ou have and don't want to hear it.  I was kind of yelled out for doing this one time.  I was told be your own doctor and you don't need me.  How about that one?  Guess what?   You are no longer a patient of theirs.  Here's one.  Your GP puts you on blood pressure medication which doesn't work.  You tell them after a few weeks that it doesn't.  They increase it and still doesn't work.  Now you go to a heart specialist and puts you on a different medication.  It starts to work.  You go back to your GP and tell him this.  His face gets red as asks you why you are on this other med.  You tell him, my heart specialist put me on it because the one you gave me doesn't work.  It's not your fault as you are being followed up by a specialist who has been assigned to you by your insurance company.  The GP didn't know this.  You didn't know this either.  The GP get mad at you saying that you are going against his authority and goodby. because you went against his treatments.  But again, it is not your fault.  Doctors don't want to listen and close their minds off and rather just not treat you anymore.  Is that a kick in the head?  So, where does the fault lie?  How about miscommunication between both doctors and your doctor just standing down and except it if that other medication is working.  What harm is it?  And that is the way medicine is today.  Remember, it is not all doctors some are very good and listen.  It's just the few and unfortunately, the few seem more predomenent to me now a days.  I know it sucks.  So now you slam them with fibromyalgia.  You get what I mean.  Sorry about my soapbox theory.  Just stay on the right track and take care of y ourself.  Who else is going to do it for you.  Be well.

      mel

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