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I'm starting to think what I have isn't fibro!

Posted , 3 users are following.

amybober5982
amybober5982

I really don't think I have fibro but my rhuemotolgist an family doctor says it is. I had so many test done an they couldn't find anything but I always have that what if, what if it didn't show up, or what if it was to early or what if they missed something. That's how I live my life.

When all this first started I was having problems with my leg I went on the internet an researched my symptoms an the scariest word came up ALS. Well I have the muscle weakness at times an I have muscle twitches an the muscle cramps so I seriously convinced myself that I had ALS an my life was a wreck until I seen the doctor an he said no way an did a MRI an emg which all was normal. But my mind has a mind of it's own an I still have that fear of having that monster disease an I just can't seem to move forward I hate it hate I hate it.

Deep down inside I don't think I have it but I'm just not sure if my symptoms match up to fibro.

I don't have a problem sleepin but I constantly tired, an I'm not always in pain but uncomfortable like crampy most of the time but my main problem is my left leg. It has been like this for about 3 weeks. It's not like this all day but off an on everyday. My thigh burns at times, I have a cramp in my in er thigh at times, my leg feels heavy, fatigued an of course the numbness in the foot an sometimes the cold feelin.

I am going to make an appointment an I hope they don't tell me that I have something I can't handle.

Have a good day ladies I'm going to get my heating pad out!!!

1 like, 24 replies

24 Replies

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  • TeresaJS
    TeresaJS amybober5982

    Posted

    Hi Amy.

    Perhaps your could grab all this you're posting here and make a document  to hand in to your doctor? I would even include my fears and concerns.  If you have a specific pain - left leg  - then that's what's must be checked first. As I said before it sounds like a strained nerve. XX

  • kaz_40
    kaz_40 amybober5982

    Posted

    Hi Amy Before I was diagnosed last year, I had every test imagineable and blood tests galore. out of the many tets blood tests I had only 1 blood test showed something up which was low in vitamin d. We have whats called 18 pressure points all over our body. did your rheumatologist do this test along with sending you for a bone scan and blood test. this what my rheumatologist did with me it was to rile out rhumatoid arthritus. I would see your gp write down everything that is bothering you and your concerns. then go from their. fibro is based on pain and has over 100 different symptoms. because we are all different fibro varies from person to person both in the different symptoms you may or may not get but most importantly the severity of it. on a scale of 1-5 1 being not to painful 5 being extremly painful. personaly speaking If it was me I would have a good chat to your gp. and be honest with them and if you feel it isnt fibro then say so. my dr asked for my opinion as to whether I thought it was fibro I had. both of us came to the same conclusion the rheumatologist confirmed it. I personaly would go with the diagnoses that youve been given But that is your decision hun.when we are told we have fibro some of us go through whats called a grieving stage, where we grieve for the person we use to be and also you can go into denial not wanting to accept the diagnoses or how its affected you as a person. You go through different emotions when youve got fibro. thinking of you take care gentle hug 
    • derek1979
      derek1979 kaz_40

      Posted

      i to feel like im grieving over the person i used to be but at the same time i lost my mother in law to cancer a few weeks ago and i cant grieve for her or the person i once was i have gone through the denial stage and feel im still stuck in it cause i dont feel like me anymore i try to stay positive but cant cause this just inst me i want to be me again but its not going to happen guess i have to just accept it this is my life now bed bound and in constant pain it sucks but theres nothing i can do about it plus on a scale of 1 to 10 where 10 being the highest pain rate my pain is at minimum a 6 but most of the time it can exeed 10 hence the reason im bed bound and the pain killers dont work nothing does i just want to be my old self again why do i have to put up with this its no life for anyone
    • janet26165
      janet26165 derek1979

      Posted

      Hi Derek. Sorry to hear your feeling so low. I think you need to speak to your GP. Write down what you want to say to him,her so you don't forget what you want to say. Have you tried cognitive behavioural therapy or counselling. It is hard to stay positive while fighting the system. I think it would help for all of these people who think we are putting it on, to walk a mile in our footsteps, figuratively speaking that is.

      Take care and gentle hugs

    • kaz_40
      kaz_40 derek1979

      Posted

      Hi derek My sincere condolences to you on the loss of your mother in law.To be honest with you I dont like the person Ive become wish I could go back to the old me. I have always been a strong independant person worked hard. since having fibro Its like an alien has taken over my body. Im not the strong person and independant person any more. Im having to rely on my husband more more, when Im very ill and bed bound I have to have carers in to look after me, which never goes down well with me having to be looked after like in that way. I feel funerable some times lonely depressed, I dont like the thought of being like this for the rest of my life.But all we can do is take each day as it comes and get through it the best we can. being on the forum has helped, as your talking to people that are all going through the same as you. we understand better than any 1 what its like to be living in sheer pain constantly.You can have good days bad days its just taking each day as it comes. Im sorry for your loss and for how your feeling you have our support, thats all we can do is support each other through it take care.
    • kaz_40
      kaz_40 derek1979

      Posted

      cognative therapy and councilling may help you your gp would refer you
    • derek1979
      derek1979 janet26165

      Posted

      i have tried all that and counciling only helps for the depression side of things for a short while as the pain gets worse i feel like im going to end up in a wheel chair just to get around cause i cant walk to far i can only move just a few yards then im that exhausted i end up on my backside and my wife has to help me up i feel like such a burden to her i really do it should be me looking after her shes amazing and i love her so much for all she does for me i just could not survive without her i will have a chat with my doctor about some additional help as my wife needs a break and i only just now have accepted what i have but it is so hard to deal with and its never going away but even though it gets me down im so happy i have you guys to talk to it honestly means a lot to me and gentle hugs to you to my friend x
    • kaz_40
      kaz_40 derek1979

      Posted

      Hi Derek I know how you feel about feeling like a burden on your wife. I feel like that where my husbands concerned. I have to rely on him for everything I feel so guilty about it. I tell him every day How Much I love and appreciate him. Its not only us that are suffering, but it hurts our loved 1s too to see us in so much pain and them unable to do anything about it. My husband has cried before now he doesnt like to see how I am and struggling. He said to me today if I could be granted just 1 wish it would be to make you well again. Its hard going on us our family all we can do is just plod on the best we can and take each day as it comes take care gentle hug
    • derek1979
      derek1979 kaz_40

      Posted

      thanks and i will support you to we all need to stick together cause thats all we have got really support wise cause no one else understands just us and i thank you so much for your support it means the would to me and its nice to know im not the only one and you seem to have the same problem with it as i do i to want to be me again but i know in my heart that person is now gone so have to try to adapt to the knew me now and get the best out of life that i can as hard as it will be i will trty to just take each day as it comes and try to get as much enjoyment out of it as possible so thanks for helping me make that conclussion lots of hugs and kisses from your forever caring friend derek xxxx
    • derek1979
      derek1979 kaz_40

      Posted

      well said and im glad you have a great guy there tell him from me well done for stayiong true to his wedding vowels im really happy he takes care of you just as my wife does for me and we are so lucky to have them and i feel so lucky to have you as a friend x
  • janet26165
    janet26165 amybober5982

    Posted

    Hi Amy. I agree with Kaz. If possible book a double appointment with the GP as you have quite a bit to discuss with them. Write down everything you want to say so you don't forget anything. Take care. Gentle hugs
  • kaz_40
    kaz_40 amybober5982

    Posted

    Hi Amy Just thought if I was you I would book a 10 miniute appointment with your gp so you can go through everything with her or him.easier said than done but try not to stress worry or you will make yourself ill.take care thinking of you big hug coming your way smile xx
  • amybober5982
    amybober5982

    Posted

    Just tryin to understand fibro a little better so I can try to accept it. I know everyone is different but can it affect one limb on one side at a time for days?
    • kaz_40
      kaz_40 amybober5982

      Posted

      Hi Amy personaly speaking from my own experience yes it can. It has affected my left leg for nearly 2 weeks then it went off again take care gentle hugssmile xx
    • amybober5982
      amybober5982 kaz_40

      Posted

      That makes me feel better sorry to be such a pest an ask so many questions but what symptoms were you experencing with your leg an was you having it in just one leg an no where else. Sorry but it really helps hearing from someone else.

      Thanks

    • kaz_40
      kaz_40 amybober5982

      Posted

      Hi Amy Its hard very hard to try to understand and accept whats going with our bodys, fibro throws so many different symptoms at us. That it can be daunting and frightening at times. I find the best way to handle it if you can and its not always possible to do. Is I try disract my mind from fibro, whether its replying to you girls doing a word search watching a film reading a magazine book anything to try to keep your mind off fibro even if its only for an hour. worry stress only make your symptoms worse so if you can try to relax easier said than done at times but trying not to stress worry and try to relax may help with the pain and focussing on something other than fibro will also help. fibro is a learning curve for us all and trial error on so many things. gentle hugs 
    • kaz_40
      kaz_40 amybober5982

      Posted

      Hi Amy sweet heart your not a pest at all. My left leg felt so weird it was a horrible feeling. it was numb it felt like it had been twisted round it felt heavy cold to the touch at times it felt like a dead weight very heavy. When I tried to walk it was like I couldnt use it. it just didnt want to move. so I was having to put all my weight on my right leg and drag my left leg.it was like this for nearly 2 weeks then it went off thank goodness. it wasnt a nice feeling at all.what experience I had in my left leg hasnt happened in my right leg.it was just my left leg gentle hugs take care 
    • kaz_40
      kaz_40 amybober5982

      Posted

      also you will find that some symptoms you have may last a day others a couple of days and some symptoms can last longer. It is also worth you having a chat with your gp. Just incase anything else is going on but also to put your mind at rest. if it was me I would see my gp and have a chat to her. it will put your mind at rest and you wount be worrying I hope you will go and see your gp. take care thinking of you gentle hugs
    • amybober5982
      amybober5982 kaz_40

      Posted

      You make me feel so much better, you have pretty described what is going on with my left leg except for times I having the burning thigh an numb foot an it's been about 3 weeks. Hopefully this will come to an end soon. I was just so concerned because it was just in my left leg an foot an I thought it had to be both sides.

      I am going to make an appointment tomorrow morning I have spoke with her a few times an she said that it is defentially not what I'm afraid of it's fibro causing it. Where I go to the doctors they have a thing called my chart were you can look up all your information an message your doctor. So I have messaged her a few times about my situation an she a suers me that it's fibro.

      I am going to see the nuerogist just in case an maybe it is a pinched nerve hopefully nothing worse.

      Thanks a bunch you make a difference.

    • kaz_40
      kaz_40 amybober5982

      Posted

      Hi Amy your welcome Im here for you, fibro is a horrid condition to have with everything it throws at us.My left leg is very weak I have lots of problems with it . when I had physio, the physio said my mobility wouldnt get any better it hasnt its got worse. my left side is my weakest side things hit me harder on my left side. It means alot to me to know that Ive helped you and made some differance. You have my full support If I can help at all I will take care gentle hugsmile 
    • kaz_40
      kaz_40

      Posted

      Hi Amy let me know how you get on at the drs and also when you see the neurologist thinking of you take care gentle hug xxsmile
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