Newbie needing help!

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It all started about three years ago,I thought I was getting the flu,went to bed and everything ached,got up couldn't put my feet to the floor the pain in my heels ankles,legs,hips arms,fingers ,knee and  head was awful,I have the same pain for the last three years,it's better some days and worse others,I saw a rheumie at the beginning,I was in there about three mins and told I had planter fascilitis,I've been back and forth the docs for blood tests always ok,I'm fed up of being tired and hurting,I've had cortosoid injections in knees and arms twice but they don't work,I've a doctors appointment Monday any tips.? The only thing I can tell him is I feel like I'm constantly walking through water!! If that makes sense

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  • Posted

    Hi

    Your story sounds so much like mine, I was forever at the doctors and was also told I had plantar fasitis at first. I was always complaining about my leg from toes to lower back and was told I was walking differently because of my foot problems, and given an insole for my shoes. I was told I had to wear it 80% of the time or it wont ease. Well I wore it at first for a while and I found it was giving me more problems than I started with, so I stopped using it and the intense pain left. It took a while and can flare up again but never like the first time which lasted over a year!

    I aslo understand your description of walking through water, I used to say I felt like I was walking through thick mud !!. and sooo tired !

    My blood tests were all OK too, and was diagnosed with depression and insomnia!!

    I was always at the doctors complaining of random pains,neck,fingers,knee,arms,vision and every visit they asked what I had done to injure myself and I said nothing at all and they could never find any visible signs of injury and just gave me pain killers.

    My advice to you would be to ask them out right what they think is causing all the symptoms you have, if they have no answer ask if it could be fibro or to be referred to someone else because you need to know what is wrong!

    I didn't do this for a good while and was just sent home with stupid reasons for things like "you have slept in a funny position" or "try yoga !! "

    You have to make them see how much you are hurting.

    The ball started rolling for me when I was so ill I was like a zombie, every bone felt like it had been broken,my vision was shakey, I couldnt stand any light and felt really dizzy and so anxious. I stayed in bed sleeping for four days straight and my hubby rang the doctor. I think having someone else worrying about how ill I was helped the doctor to look into things much more.

    Maybe you could take someone with you on Monday to give another voice to just how badly its affecting you!

    Let me know how you get on

    Take care and good luck

    Amanda

     

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    • Posted

      Thanks for your reply, your story could be mine,just hope I don't get to the point where my partner needs to help,I'm sorry you felt so poorly and it had to get to that point before you had help,can I ask what the doctors prescribe for fibromyalgia and did you feel itchy all over your skin?
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    • Posted

      Hi,

      I was diagnosed in June and I have been prescribed Amitriptyline. I can take between 10 and 20mgs, but I have not tried it yet, I am nervous of all the side effects and am putting it off !! I am in a major flare right now and feel I am going to have to give it a try because I need to try and feel better. I thought taking things easier and avoiding stress would help me a lot and I might not need the meds , but this has not been the case for me sadly.

      The time I mentioned before ( when hubby called the doctor ) was the first time I had experienced the itching all over my skin, it was awful..I had no idea what was happening to me !. I have had it many times since then, it is a symptom of fibro although I didn't know I had fibro when I first had it, now I do know it is less of a worry, but horrible to put up with. I also developed restless leg syndrome when my foot first started hurting, and that is another symptom that has been quite regular since.

      I really feel for you because I have been exactly where you are and what you really need is someone to tell you what is happening to you!.

      If it's fibro, just having a name for what's going on helps a lot !

      I think if I had told the doctor all my symptoms they may have diagnosed me earlier, so if you have any of the other symptoms of fibro that I also had but never mentioned (because you feel like a hypochondriac!) do tell them.

      Some of mine were:

      needing the loo much more than normal day and night

      smelling things really strongly that others couldnt smell at all ( my hubby dreads the words "what's that smell..lol"

      sensitive to light

      weight gain

      pins and needles / burning in hands and feet

      restless legs

      itchy skin

      mood changes

      very bad PMT

      Good luck with your appointment and let me know how you get on !

      Take care

      Amanda

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    • Posted

      Hi Amanda it's really nice to know that someone else is going through the same ecperiences . I did speak to my GP about fibromyalgia and her reply was its just another label which makes you feel like crap and as you said you start to think your a hypracondriac my reply to her was how can I have moderate osteoarthritis and be in this state she just shrugged her shoulders and said this is just how it's going to be , brilliant I think thanks for nothing . I have just started taking amprathripalyn 20mg I had tried them before and found the side effects ok just made me really tired which didn't work for me while working and driving this time they have actually made a big difference to the pain I've been suffering with in my right lower arm wrist, hand but I can't sleep don't know what's going on but I'm only sleeping 2 or 3 hours a night, when I do sleep I wake up wet with sweat and prickly skin I am menopausal and have been since my early 30s but these swets are different . I also get all the other symptoms you listed and at present suffering with a flare up and have very bad mood swings today especially and it just reminds me of bad PMT . Sometimes I think I need a badge with my condition written on so people understand there doesn't seem to be many positive days at the moment and I am totally drained physically and mentally.
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    • Posted

      Oh I am just the same right now, my mood has been awful, and then you feel guilty for snapping at people, which makes you feel worse than before!

      I am also waking up sweating and the prickly skin.

      I am 45 years old and don't know about it being menopause. I did ask my doctor before I was diagnosed with fibro if my symptoms could be menopause, she just asked if I was regular and I said yes,so she said well we wouldn't even test you for that because the first sign would be irregular periods, so it's not that !! . Then they expect you to just walk away with some painkillers!

      I never even realised the huge list of symptoms fibro has until diagnosed and realised that all of my complaints were down to one condition. That makes you feel a lot better, because although you are falling to peices you know why lol.

      I have always had bad PMT but this is awful. I could swear I was in early stages of labour sometimes !

      My sleeping is proberbly the worst it has ever been, like you it's about 2 hours. Do you find that even the smallest noise wakes you back up. I think the lack of sleep makes all my symptoms worse for me. That is why I am thinking of trying my meds now. The doctor said they should help my sleep so I really should try to help myself out of this flare if I can !

      I am finding it difficult to come to terms with the thought of feeling this way forever, but this group is helping me a lot. It's nice to chat to others who know what I am going through and let me know I am not going mad !!.

      Take care

      Amanda

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    • Posted

      Hi Amanda yes I find the same as you the slightest thing and I'm awake wide wake which causes sleep deprivation which used up more energy on top off the energy already used to cope with chronic pain. Have you been referred to your local main management clinic ? They are brilliant but to get referred I had to try lots of different medications which I found really difficult because of there side effects . The pain clinic runs seminars which I found good you meet other people also living with chronic pain and all going through the same emotions we all had to keep a diary for a week and measure our pain levels through out the day then you go back and on a one to one basic they go through your diary to see if there are areas that need extra support or better pain meds as I've said befor I'm using pain patches which our morphine based with slow release throughout the day these work for me but your GP can't prescribe them you have to be seen at the pain clinic, as you can imagine this can be quite a long process but got me had been worth it ,
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    • Posted

      Thanks Amanda,my appointment with doctor went really well,saw a new doctor who had all the time in the world and listened,looked back at my notes seen how long and how many times I've been back and forth,read that I have had all the blood tests which were negative,pressed my back and shoulders,which did hurt and said it was fibro and gave me ampratriplyn? And to go back in a month to see how I am on them and then he will refer me to rheumie,feels like a weight has been lifted,not the pain but knowing someone's listening makes a difference,thanks so much sonia
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    • Posted

      Hi Sonia,

      So glad you finally got an answer !. It really does help to stop the constant worry of so many different symptoms, and put them all under one condition!. Now you are where I am and just starting to learn what triggers this fibro and makes you flare up. I am going to start and keep a dairy of all my symptoms and the things I have done and ate each day and see if I can see any links which are making me worse. A lot of people have said they do this to help control symptoms and flares. It can't hurt (not anymore than we do already!).

      Let me know how you get on with the meds, you might encourage me to start taking mine!.

      I am here if you ever have any questions or just want to rant.

      Take care and keep in touch

      Amanda

       

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  • Posted

    Hi Sonia I can totally relate to your post I had a fall while leaving a restaurant with friends landing badly on my right hip and bottom from that night I experienced a lot of pain after various xrays it was said I had moderate osteoarthritis in my right hip. Facet joint and lumber sacral area I already had the condition in my shoulder collar bone and both feet things slowly at first deteriorated until I got to a point when pain was unbearable

    I then started the long journey with pain relief trying most pain tablets which caused awful side effects but no relief I was then

    Referred to the pain clinic and diagnosed with chronic pain they tried to cortisone the facet joints for relief but this didn't work

    So given brutram patches which gave some relief and now I

    15 mmg patches but I'm still in lots of pain over the last six

    Months I have develop painful hands wrists, ankles knees and

    Severe fatigue which has interfered with my work having to take lots of time off work leaving me feeling depressed . last week

    I was seen by the OT who specialises in arthritis she very quickly not used the swelling on my right arm and said I had inflammatory osteoarthritis after listening to my story also felt I had

    Developed fibromalgia the relief I felt was huge at last someone had listened to me and not dismissed me I am off work at the

    Moment again. I can not believe how much my life has changed over the last 6 months and how I now need to change my life not because I want too but because it is out of my control the worst thing about living with this is other people's ignorance and understanding of this condition sorry this is such a long replied and there is much more I could say about my own journey but I do feel for you but you are not a lone

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    • Posted

      Thankyou for replying, It's nice to know your not alone,sometimes I think I must be making it up! Or other people must feel this pain and it's normal and I'm just making a fuss sad  I'm fed up of doctors fobbing me off and also me for sitting there and letting them do it,I don't have the energy to argue. I'm fed up of myself moaning but have to keep going,I'm just waiting to feel better but it doesn't seem to be happening 
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