Diagnosed with AS for two years

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I have suffered back pain for 30 years and now finally the neurologist has a diagnosis after seeing my MRI. Having been a nurse for most of my life, I put it down to "nurses back"...

Now I am having eye problems and chest pain, x rays show an enlarged heart and also have high B.P. I can only walk a few meters as my legs don't work very well. I am on Amitryptaline and Tramadol for severe pain. Still have trouble sleeping. Can anyone suggest anything please. I need all the help I can get.

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  • Posted

    Hi Gloria, you need two things - 1) to understand what is causing the pain (nerves obviously) - did you talk to an orthopedist? He/she may give you a shot which may reduce the pain. In that case you will go to the pain clinic for these shots... What did neurologist say? Secondly, you should see a rheumatologist who will put you on meds to slow down the process of AS progressing. It's not a neurologist's job. Neurologist may give you some meds which may reduce the pain. As these are reduced dosages of meds for epilepsy or psychological, I never agreed to try these. But in your case maybe the benefits will outweight possible side effects. As for the immediate relief? Try to sleep with a hot pillow. Or electric blanket. Keep yourself active (which is a part of your job anyway) - it's gets worse if you don't move. Yoga is said to be good - going to try it soon so not from personal experience. Change of food may help - reduce carbs (especially bread and potatoes). Reduce cabbage and tomatoes. To zero. Reduce oranges. Reduce meat, especially the red one. Try fish oil (helped me a bit). You should play with painkillers - everyone is different, so... Sorry that I can't help more. XO

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    • Posted

      Hello, I am limited with accessing specialists here In Indonesia but have been to Thailand and have seen orthopaedic specialists and neurologists there. They all say that just managing pain is my only option now. Electric blankets would not be possible here as the heat is too much for those...but I have thought of buying a small one to just lay down on sometimes at night mostly when it is cooler ( 25deg c) I am not able to be more active and have now had to stop work. I have been running a free clinic for the poor in a remote mountainous area but walking there is now impossible and to stand for a long time is not possible either. I can still cook and do a few chores at home but not much really. Maybe I should tell you my age...70 next birthday. So I feel OK with retiring lol...My brain is still very active...so I am lucky with that...
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    • Posted

      sorry forgot to mention that I cook with pure coconut oil made here in the village and also use tumeric regularly in cooking. Try to each fish when it is available here....prefer it to meat. Do not eat red meat, only chicken. Cant' do Yoga. Do like some carbs...potatoes, rice and some bread, homemade...but rarely. Grow organic vegies in my garden, lots of herbs, spinach, bananas, papaya, and eat organic eggs from my chickens.

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  • Posted

    Hi Gloria,

      i'm very sorry to hear about your pain and other issues.  AS is very ugly as it seems to have a very broad arsenal with which to attack a person.  People's symptoms seem to vary widely.  If I may, though, I'm very curious about the issues with your legs.  You say that they simply don't work very well.  Can you go a little more in detail about that?  Are you losing muscle control?  Did your MRI tell you anything specifically about why you are losing the muscle control?  

      I have spoken previously on this forum about my family history with chronic back problems.  I am the only one specifically diagnosed in the AS family of diseases.  But my brother and sister are so far worse off than I am.  My sister can only get around with a walker and my brother is effectively a paraplegic because he has very little control of them.  Consequently I am trying to get a handle on this particular effect of AS.  Is it simply a matter that structural changes in the spine leave the spinal nerves that control the legs pinched or is there something else going on here that impacts the muscle control of the legs.

      Any specific information about why the doctors believe you are losing control of the legs would be appreciated.

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    • Posted

      Hello Peter, thank you so much for your reply. I have spinal cord stenosis and some kind of vascular problem in my legs. I have never had varicose veins before but now have large lumps the size of small eggs all over both legs. My legs go numb and pain is worsened by walking. I did break two vertebrae in my lower back many years ago due to an accident and have had problems since then. The specialist tells me there are many spurs on my spine and my condition is now inoperable. I have been to many hospitals here in Indonesia and Thailand and had corticosteroid injections into my spine, groin,hips and hands which helped for about 3 months but then all the symptoms returned. Heat packs do help a little as I have muscle spasms in my legs and arms. I am mostly in a wheelchair now but still try to walk a little as I don't want to give up without trying. The doctors tell me that I am doing well considering my situation as most people are paraplegics with this...They keep asking me if I am incontintinent but apart from struggling to the toilet to pee five or six times a night nothing more drastic than that yet. Advice/help would be greatly appreciated.

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  • Posted

    Thank you, Gloria for this information.  I certainly didn't mean to pry too deeply.  My symptoms are primarily the chronic pain and stiffness in the spine although I do have sciatic type issues going down my backside and my left leg along with numbness and strange sensory issues in my feet.  However, I have seen both siblings either requiring a walker to get around or become complete paraplegics and I know that there but for the grace of God go I.  I'm trying to fight this off for as long as I can.

    I'm also someone who believes in cause and effect.  If you are losing sensation and muscle control in your legs then there must be a physical reason.  Doctors should be able to determine that reason and hopefully do something about it.  I'm beginning to see that that is not always the case but that is why I was inquiring about the cause in your case.  I watched my brother descend into paraplegia seemingly without fighting to get to the root cause and it drove me crazy at the time.  At any rate, please forgive me being nosey and I hope you are able to find some relief and comfort.

    Best regards

     

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    • Posted

      Hello Peter...you are not being nosy or prying.I am here to help anyone and also get help for myself. I agree with your view on some doctors. When I was able to treat patients at our clinic here, before all this escalated into "retirement"...we always looked for the cause of a patients illness. If the patient presented with a headache we would not just give paracetamol...but find the cause. Unfortunately not enough is known about the spinal problems we all share here on this forum. Little by little we can compare issues and what helped us as individuals..and share those. It's easier for doctors to just give medication...as spinal problems are an " unknown enigma" but lets go on regardless and do what we can for each other. Sharing a problem is halving it. Hugs..G

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  • Posted

    Hi I suggest u take paracetamol on top of your other meds 20 minutes before going to bed. It is easier to get to sleep when pain is relieved. You can take it again if pain wakes u in the night but only once: you can only take it twice in 12 hours. I am not sure if this works for other people. I think good sleep is key to getting better.
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    • Posted

      Hi..yes I have taken paracetamol on top of my usual meds...only occasionally though as it does cause constipation...for me anyway. Then I have another uncomfortable problem to add to the others. I try to listen to my body and when it complains...I heed the message. If I can't sleep at night, then I have to catch up during the day..No big deal with that as I am "retired"...so I have dismissed the guilt feeling of being a lazy bones. Just do what I can, when I can...Thanks for the info.

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