Advice please

Posted , 9 users are following.

Could any of you tell me your story please. As I have been suffering for so long now and kinda stumbled on this. But it's just me! The heel pain, the fact that my hips aNd bones feel like they are going to come through me skin. Pain in my shoulder that wakes me.

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  • Posted

    Hello heidI at last a fellow heel sufferer,I hate this as you walk and pay for it all night hip,heel,ankle inner thigh.do you get the neck pain where you carnt look without turning like a robot.p's .had mine for over 6 years now.

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    • Posted

      Hiya yes and it make me dizzy. I'm going to the docs next week but I'm worried about suggesting that this is what I have. I have been in pain for yrs and am only now pricing things together.

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    • Posted

      please don't worry about suggesting 'things' you have researched to your doctor.... they are after all 'General Practioners', they are not expert on every medical subject known to man. I have been fortunate enough to have GP's that have actually said this to me, and it can help them to either diagnose or refer for indications. If you are polite and not pushy, I'm pretty sure most GP's will listen carefull to what you have to say.... at the end of the day, you are the one person who can relate your symptoms specifically to you... we are all different and conditions/diseases can present in different ways, according to the individual. I've been suffering with chronic joint/neuropathic pain for nearly ten years with spinal stenosis treatment, carpal tunnels to be done in two weeks, MRI awaiting for shocking pain down my arm and bloody 'benign' fasciculation syndrome to boot.... Don't give up! stay strong and present your symptoms as accurately as you can and hopefully you will get an answer that can help you move forward x

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    • Posted

      I'm so sorry to hear about all that you have been through. But I have to warn you about carpal tunnel surgery.

      My sister had it 15 years ago and came out in a wheel chair because she got RSD from it and it spread to her legs too. It's called CRPS now. Pain is listed as worse than amputation.

      I know most people will be fine but apparently there is a 5% chance of this they don't tell you about. The consent form mentions only chronic pain.

      Talk to your doctor and ask him about the chance of RSD/CRPS occurring before your surgery.

      Studies have been done that show taking large amounts of vitamin C can prevent its occurrence. You can google it.

      So if you do have the surgery be sure to take vitamin C before and after. I wish you luck.

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    • Posted

      Can I just add to your post by suggesting that if our doctors don't seem to understand this disease....find a good site on the net..and print out the contents of the site and take it to the Doctors...I did this early on in my illness and my neurologist was really grateful for the information as she knew so little about AS....it might help with a diagnosis and also maybe help other patients that may present with similar symptoms....G

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    • Posted

      I was Miss diagnosed for many years with polymyalgia and GCA. I have recently been diagnosed by an expert in AS, who tells me my head pains etc are doe to inflammation around the neck. You mention fasciculations!? I get them in the tongue keeping me awake all night. Do you also get them in the tongue?. Can't find anyone else who suffers with this, even oral medicine consultant is confused. 😏

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    • Posted

      sorry to hear about your sister, sounds dire.... too late for talking now, I'm booked in next week. I'll take my chance as I can't live with CTS anymore anyway. Thanks for the tip with the vitamin C :-)

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    • Posted

      I've had them in my tongue, but they are so random jumping from one place to the next, all day everyday...... twitch twitch, twitch twitch..... sorry to hear it keeps you awake. I'm on 3 different med's for neuropathic pains etc and the Amitriptyline helps me to sleep.

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    • Posted

      Hi Poddy, I'm also in Amitriptyline and Pregabalin. My nights of twitching seem to coincide with my reducing steroids even by 1mg, so I definitely feel it's related to inflammation. It must be really annoying to have twitching every day. I currently have twitching in my left eyelid, my GP says that's usually caused by lack of sleep. 😏. Thanks for replying 😃

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  • Posted

    I went to my doctors for a eternity, had 3 cortazone injections no joy..The old doctors not bothered saw a young gp,fresh from med school bingo mri scan within 3 months,inject every week and pain killers every day I have pain nearly constant.dread to think what it would be like without my meds thanks to my young gp who listened to me
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    • Posted

      I did the same as you did...after the "run around" for years. I found a wonderful doctor who actually took me to the lab and then on the Xrays and an MRI..he was with me the whole time..learning and understanding more every time. He still phones me to find out how I'm going. However he has since left the area and is now committed to bigger and better things...but I count him as a friend and value that so much. I know I can email or phone him sometimes....he is so special.

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  • Posted

    Have u been diagnosed with AS? I know each persons case is different, but do u have sacroilitis (SI JOINT pain)? It seems to be very common in AS. Have you had X-rays, MRI,etc? Those also help with diagnosing. My case is sacroilitis, iritis(case of re inflammation), morning stiffness for several hours and recently my hips are hurting more. Currently on VIVOMO (NSAID) and will be starting Humira in a couple weeks.
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    • Posted

      No I haven't. I have made an app this Fri

      I have been treated for yrs for neuromas in my feet. Only to be told I haven't got any more but the pain is worse and I have it in other places (which I have had for yrs but just thought I was throwing my body out walking fumny). So if I don't have any what's all the pain? And I startEd putting things together. So I don't know if this is what I have, I grabbing at straws. But the pain sites and the tummy trouble just woke something in me xx

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  • Posted

    Sorry I made a typo CORRECTION: iritis (eye inflammation)
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