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Do my symptoms sound like fibro???

Posted , 8 users are following.

han75
han75

hi all

ill try and make this quick!

just over a year ago I started to become unwell- little things, pain in my right hip, flu like feelings etc. my gp referred me to a rheumatologist,several blood test, all neg for rheumatoid arthritis. Over the last year my symptom have gotten worse and near on everyday to some extent. At my last rhumy apt he said I could have fibro and to discuss with my gp, I haven't done yet ( this was a couple of months ago) I'm just not sure if my symptoms sound like fibro... So here's a list of all my problems!! 

Sharp strapping pains in my head

headaches Maybe once a wk

joint stiffness in wrists, hands, ankles, knees

pains in all joints, & some fingers

pains in chest

muscle pains in legs and forearms

pins and needles in hands and feet

warm sensation in feet

stabbing and sharp pricks tingling feelings 

heavy feeling in legs when laying down, it feels like I can't move them. If I walk too far my legs, hips and ankles become painful and difficult to walk.

sudden jolting in brain when trying to fall asleep. 

this can happen at anytime, sometimes I feel much worse then others. 

I dont feel I have brain fog, I am very forgetful and clumsy 

I don't have tender points and I'm not fatigued all the time. 

Sorry if if this is long winded, I have felt something is wrong for so long now, no one seems to care or take any notice and it's really starting to get me down. Life has changed so much for me, no longer fit and active, I just want to feel like me again!! 

thanks  for taking the time to read this 

best wishes to everyone 😊

 

0 likes, 16 replies

16 Replies

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  • archemedes
    archemedes han75

    Posted

    Sorry to be blunt, but you really should stop guessing about what might or might not be wrong with you.

    Doctors all go through many years of training, and specialists even more, in order that they might be able to help cure people's afflictions.

    Your very first port of call should be your GP with whom you can discuss this matter and receive a qualified reply.

    In my experience guesswork only serves to prolong a problem, when what you should be doing is seeking solutions.

  • deb97936
    deb97936 han75

    Posted

    Hello han75...   sounds all so very similar to Fibro...  for an early sufferer it is very difficult to organise in your mind what is happening to the body of a day, as every day can be different, bringing on similar, same or new issues in area's of the body.  I have full on full body issues like yourself.  But I have very sore muscles, tendons etc and they become very painful.   I have suffered with my Fibro friend for 17 yrs, it developed after a serious MVA, (car accident).   Spinal trauma, neck and head trauma can trigger Fibro in the body.  I haven't been able to shake since.  I was in limbo for many years. Alot of Doctors here in NZ are not sympathetic to folk who suffer with this issue.  They are very reluctant to admit to the diagnoses.  Our Health and Welfare system is not nice, and the Govt here dictate the budgets to our Health sector.  So Doctors are dictated to....  They will prolong any diagnostic for 'a lot' of health issues.  (It has cost the lives, and nearly cost the lives of a good few friends, family and acquaintences).  Andy complaints to the Medical Council is generall always a wasted of time.  It is recorded on tape at a Medical Council meeting, (as close to the words used as possible), but the point being put across was, Quote, 'The Medical Council is here to protect the members of the Medical profession', end quote.....    So from that quote, you get the overall situation, we the 'public' who pay the taxes for such a Council, AND their large salaries only work for themselves, those in the Medical profession.  Butt covering for all manners of errors of mismanagment of lives.   I daresay it goes on everywhere to a degree.  It's all politics, and business afterall.  Now our Disabled, and Mentally challenged public, are having their lives sold to a private organisation to 'get them into work'...  The Government will pay bonus's to the corporation who is setting this up.  We had sheltered work shops here in NZ, till the system worked against them and they got shut down.  They used to even make our RSA Poppies, till the Government out sourced to China, like everything else.  The organisation now called Idea Sevices (used to be IHC) are selling off all the buildings that were given, donated only to the 'Challenged' folk in towns because they are not making enough money off the buildings.  Strange that all the fund raising that raises millions of $'s over the years to help toward any Rates and maintenence of the buildings is being sucked up else were, and not towards the benefical aspects of the 'Challenged'..They say now that the Community will provide.  Well it was providing, but business and politics strip away what ever the community does do.   Makes me so angry..  Being in this position of disablement makes me think and feel for those even worse off than myself.  Sorry, my little big rant over....  
    • kaz_40
      kaz_40 deb97936

      Posted

      morning deb I feel so sorry for you and evry person suffering in your country this awful treatment of you all. Im shocked and appauled how your all being treated. I thought our country could be bad at times uk but my goodness uk is a saint comapred to your country.Im just totally shocked. so sorry to read this about your country shame on them. where is care and compassion for its people? take care big hug coming to you
  • Gizmo1963
    Gizmo1963 han75

    Posted

    Hi Han, sorry to hear you have been suffering with the above mentioned symptoms. To me it doesn't really sound like you are suffering with fibro as you issues seem to be nerve related only Firstly when tested you would need to have a minimum of 11 out of 18 fibro trigger points. Most of us also suffer severe fatigue, brain fog, poor concerntration, migraine, hot sweats, anxiety and depression amongst many other symptoms beyond our control. Has your rheumy done a nerve conduction test on you? Have you had a spinal MRI and if so what were the results? It has taken most of us many years to get diagnosed. It may be an idea to get your GP or rheumy to refer you to a pain clinic. Wish you luck in finding a diagnosis 😊
    • bronwyn97278
      bronwyn97278 Gizmo1963

      Posted

      Sorry Gizmo; but I thought Fibro Was Nerve related......extra sensory perception by the nerves............and everything else results due to the extra perceptions from these Over- active NERVES.....Bron
  • Maggers
    Maggers han75

    Posted

    Hi and welcome

    As fibro is so very individual to all of us it is difficult to tell what the problem is. Although we share similar symptoms Fibro is different for all of us.  A diagnosis of fibro is usually only given after everything else has been excluded. It may take years so be prepared for a long haul.   I started suffering in the 80s and have only been formally diagnosed about 4 months ago. Don't want to depress you and I can assure you that not many wait as long as I have but I have shared it just to make you aware just how long things can take.   In the meantime you could try various things to help.  Epsom salts in baths helps with muscle problems and sometimes the tiredness too.  I changed my diet and found it helped. No refined sugars and no gluten. Gentle exercise even when you feel you can't has its benefits.  I use supplements and hypnotherapy and take no drugs as most seem to have adverse side effects on me.  Keeping a positive mental attitude is the only useful thing my rheumatologist said to me before discharging me back to my GP.   Good luck in your quest to find out exactly what the problem is.

  • han75
    han75

    Posted

    Thank you so much for you replies.

    I forgot to mention that I also get pain in my upper back. It's along the spine from my neck down. It comes on for a few days then will ease off again. I've had pt a few times and she said other then being stiff the muscles etc felt gd.

    I exercise when I'm having a gd day, I do a jazz class and on a gd day can do high impact! On a bad day I've no energy and I'm in pain so either go and go low impact or stay home!

    I've also taken a supplement of magnesium citrate.

    I have been to the gp several times who says to go see rheumatology and I've had several apt with them. They said to wait and see if a diagnoses becomes more obvious. Then at my last apt I see a different consultant who said to think about fibro.

    I have thought it was nerve related for awhile but as it's all so weird and random I never mention everything to doctors. They don't ask to be honest and i feel embarrassed to list everything.

    I can't believe how long it can take to get a formal diagnoses, that's the hard part just not knowing what's going on! Telling people I don't feel well or I'm not having a gd day but not being able to explain..

    Take care all and wishing you

    A good day!

    • Maggers
      Maggers han75

      Posted

      Forgot to say in my reply that you may find it helpful to keep a diary. I did and found it so useful to show it to the rheumatologist.  It will help you remember what to mention at your appointments.  I had mixed feelings about the diagnosis. Relieved that something had been identified but not wanting to be defined by a label - if that makes sense.
    • bronwyn97278
      bronwyn97278 han75

      Posted

      Hi Han;  I have read all others' inputs, and agree with some of them.....maggers has made a good comment re "keeping a Diary of symptoms in relation to when/how the pain comes and what it feels like....and what parts of body is affected"......if you research Fibro, find out if it Sounds like you, then Yes, definately speak to your GP....and if the Rhuemy that you saw, suggested Fibro, then start looking for treatments/meds....for me they go with each other....natural therapies and medications (unless you find that you have allergies to certain foods/medications).....the Sooner you start treatment, the better you will be, and hopefully, don't become as debilitated as some of us who did have to wait many years to get the Diagnosis.   As someone else said, it may be a "series of Elimination", as Fibro does have symtoms of other conditions.....expecially where your "description of headaches".....this can be something completely different...and you Do need to find a Diagnosis.  Once  you have made/seen your GP, and hopefully he/she is knowledgeable re Fibro/PMR with GCA (I put this in in connection to your headache description.....I know many Fibro sufferers get migraines/bad headaches...but if Shooting and near eyes/temporal/ears...this needs to clarified)...and other conditions such as Rhuematoid Arthrites (which can easily be identified by bloods/symptoms....and I think you mentioned that this has been excluded).......my feelings are that Yes, you do sound as if you have Fibro and ?CFS, which usually overlaps with Fibro, but not ALL the time.....then let us know, and we can all give you our experiences of what works for each of us........first things first, see your GP (with your list of symptoms/diary) and get back to us, as we will all be waiting for your reply..............meanwhile keep smiling....smileBron
  • katmaha1012
    katmaha1012 han75

    Posted

    Hiya Han 

    Definitely speak with your GP, only they can help find answers. It is so frustrating at times, but God is with you and can help ease your suffering. Today I have no energy whatsoever, do I have fibro? Who knows? It's so hard at times, try and relax. Hugs. Xx

     

  • kaz_40
    kaz_40 han75

    Posted

    Hi Han75 It took me 10 years to get a diagnoses for fibro, thats was after seeing many specialists many many tests and blood tests. drs like to rule out different things before sending you to see a rheumatologist. rhematologist is the person that normally diagnoses fibro. the rheumatologist I saw did a pressure point test over different parts of my body. their are 18 In total I got the full 18 he sent me for a blood test and bone scan to rule out rheumatoid arthritus. When the tests came back the blood test showed I was low in vitamin d. he then said you have fibromyalgia he discharged me and sent me back to my gp. your gp is the person to see in trying to get to the bottom of things thats going on with you.as you can see it can take many years in getting a diagnoses some people can be lucky and get a diagnoses sooner. hope you gt some answears soon take care
  • kaz_40
    kaz_40 han75

    Posted

    You must be honest with your gp on how your feeling and what your symptoms are dont be embaressed  they are their to help you and to treat you. write everything down all your symptoms write down how you are feeling each day what symptoms you have that day Keep on at your gp to get you sorted out. they do like to rule out other conditions that it could be before sending you to rheumatologist for a diagnoses. take each day as it comes and do what we have all had to do and that is fight until we got a diagnoses. dont give up fight.let us all know how you get on. take care
  • Maggers
    Maggers han75

    Posted

    Kaz is right - lots of us have low vit D and that in itself causes muscle cramps/pain. Worth getting your blood checked for low vit D as it is so easily rectified. Vit D3 tablets cost about £1.   I have daily vit D tablets as my skin is photosensitive and I have to wear factor 50+ at all times so natural vit D from sunlight is virtually impossible for me.
  • han75
    han75

    Posted

    Thank you all so much for taking the time to reply 😘

    I have had vit d test the results were  - d3 32.5 & d2 <5 i've no idea what it means but i didn't hear back from hospital so assume it's ok! 

    i wilbe keeping a diary and will make sure i tell gp everything this time. 

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    i wilbe keeping a diary and will make sure i tell gp everything this time. 

     >

    • kaz_40
      kaz_40 han75

      Posted

      Hi Han with not hearing back from the hospital, I would take it that your vitamin D level was fine, if it wasnt they would of said to you about taking vitamin D tablets. My vitamin d level was low so my gp put me on on vitamin d tablets to bring my level up. I would keep a diary list of symptoms you must tell your gp everything dont hold back. take care 
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