does the pain ever go away with a.s.

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Deep pain from lower back and hips get so bad somedays pain meds don't even help

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  • Posted

    Hello Ashley...well this is my experience...Today I don't think the pain will ever go away..everything hurts.....but then...tomorrow I might think I feel better, the next day I might think I'm beating this thing....but then the day after that ...WAM...it's worse than ever. I sympathise, empathise with you, we all do. I decided two years ago I would add a huge corner bath to my bathroom to help with the pain...but you know what...I could never get in or out of it. I dread being found naked and alone in the bloomin' thing....stuck until someone can find a block and tackle. Sorry I do understand it is no joking matter....but humour seems to help me, sometimes that is. Do let us know how you are going and give us some idea of your situation...maybe we can help you or you us...Hugs..G

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    • Posted

      Thanks Gloria it help to know that I'm not letting myself down and now family might believe me more my doctor went up on pain and muscle relaxer to 90 each a month and then xanax for the anxiety went to er at hospital and that doctor said for as long as I've been on them that my primary doctor needs to up or change them and up them because of my size and pain theashold and thank you again

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    • Posted

      My goodness Ashley, what a hard time you are having. I personally have found that Amitriptyline has been so good for me. It is not just an anti-depressant but also has a beneficial effect on overall nerve pain, which we all often suffer. Can you talk to your doctor about this ? I take Tramadol if the pain gets too much but also use other things like hot compresses and Salonpas plasters. I'd advise not to try massage as it seems to make it worse. Let me know how you go.....and keep that chin up...

       

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  • Posted

    Each of us is different. Find what works you and stick to it. My advice to everyone, do the hard things.Force yourself to move. Force yourself to stretch. Force yourself to socialize.

    We're all going to have good times and bad times. Celebrate when you feel better and get encouragement when you feel bad.

    Attitude and emotions go hand in hand with this disease. Find reasons to smile! :-)

    I'm a stranger to all of you, but we share the same burden. I'm always available to listen if ANYONE needs a sympathetic ear. Just msg me.

    I live in Asia, so if I take a while to reply, don't fret.

    Smile and keep a straight back.

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    • Posted

      Hi Edward, you are right to a certain extent but I just forced myself to put the milk in the fridge a few minutes ago...and got stuck in a bend !!!  I do try the joking bit...and often it works....... but mostly it falls flat a bit like me actually. Maybe you could send us all some of your best jokes...so we can at least giggle. BTW where in Asia are you...I am too.

       

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    • Posted

      I'm in the Philippines. :-) I'm American, but live here because my Disability check goes much further here.

      I'm sorry you got stuck in a bend. But I'm happy got up moved around. Little steps. :-)

      I remember when I was younger my back did that. I recall standing from a seated position and being unable to straighten my back. I would have to put my hands on my legs and push myself up. I'm glad I don't have those days anymore. Maybe because my back is already totally fused, I'm not sure. But keep moving. :-)

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    • Posted

      I'm in Bali..I've got 10 discs affected by this thing called AS..my hands are deformed with arthritis, I can barely hold anything now...even this mouse is hurting my hands. I have two good fingers with which to type so that's good eh. I have partial paralysis in my legs....but can hobble ten meters using two sticks. If I go out, which is rare these days...I must use a wheelchair. I did save up and bought a motorised wheelchair but the walls and door frames in my house suffered from my driving...so I've had to give it up. My brain is very active still, despite my age and I am taking on a new art pursuit...marbling on paper which only requires the use of satay sticks to swirl the paint...thats about all I can manage but I'm giving it a go. Who knows, I might turn out to be good at it...ha..ha. I am so grateful for this site and forum...I actually look forward to chatting to you all nearly every day. Just wish the mouse would not give me so much trouble...any advice on that please. G

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    • Posted

      Bali? We're practically neighbors. :-)

      I'm sorry to hear about your troubles. Having a lame back, troublesome hips, painful eyes and a ribcage that tries to suffocate us, the worst is losing those motor skills due to small joint involvement. I've been blessed to have mild involvement in my hands and feet.

      My index finger on my right hand is almost useless. The joint behind my big toes hurt from time to time. The worst is my Achilles tendons. They can immobilize me. But come and go.

      I admire your desire to try something new. We really need to keep our minds and our hearts busy with new things and new adventures.

      I went to a mental health professional a few years back who helped me with coping skills and really helped me imagine living a life rather than just existing.

      I'm very new to this forum. I've been looking for groups that aren't too large. People can get lost in there. Tracking info with individual members can be difficult.

      Have you tried the voice software instead of using your hands? I've never used it, but I hear great things.

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    • Posted

      Hiya..yes I've pondered the thought of a voice thingy...but here I doubt that I could find one cheap enough for me. I can't get a pension so have to rely on my meagre funds. No problem, I will soldier on and when the mouse plays up with my hands, I have to stop and wait a bit. Can I ask you a question...? Would a TENS machine help with pain...I understand that it just changes the pain signals...I have had one many years ago when I first had my accident...I did post here about it a while back but as yet no replies. Eager to try anything to keep going a bit longer. Hugs..G

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    • Posted

      Good morning! I actually used a tens unit daily until a power surge fried it. I've been looking for one I can afford but with little sucess. I've used the little battery operated units and they're ok, but they wear out fast.

      I know many people with AS can't use massage therapy because it actually hurts them more, but I greatly benefit from it.

      I'd get a massage twice a week if I could. I love it!

      Do you see seem to have more problems during Rainy Season?

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    • Posted

      Hi, yes the rainy season seems to have lasted forever this year...we still have rain almost daily....so yes it is worse when it's wet. I have seen affordable TENS machines on line...I think it was Amazon...but I will check and get back to you. My daughter bought me an electric massager but it did make my legs worse...it was only designed for legs. It was too painful to use. With an ordinary TENS machine at least you can adjust it to suit , the one with the electrodes which can be positioned anywhere you need them. It was battery operated but mine seemed to last long enough for my needs. I'd like to use it on my shoulders and thighs...and maybe my neck. I broke two vertebrae in my lower back way back on the farm in Australia...no joke this time Edward...I got butted by a bull calf when I was bending over a day old trying to bottle feed it...That's what started this whole thing off. I was in hospital for months in traction....but I did recover well over the years.I returned to a "normal life" breaking horses etc....only to get this nearly three years ago..Mind you the diagnoses ranged from Lyme Disease, to Ross River Virus, to Arthritis, to Dengue....add infinitum. Then at last some doctor here of all places found that it was AS....phew. Anyway it's got a name now...!!!

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    • Posted

      Butted by a calf, in the Butt? It's only funny if it didn't cause damage.

      The mixed diagnosis game I played for many years. Mostly they thought I was faking because I was a drug seeker. In their defense I was a teenager and a young adult who enjoyed his recreational chemistry.I was finally diagnosed at 28 years old after I got my first bout of Iritis.

      What was the clue that gave you a diagnosis?

      Our rainy season is just beginning. I feel like I'm carrying a backpack full of bricks. I often run a fever and it's exhausting. I love hot sunny days. Always have!

      Australia explains your command of English.

      I hope you're feel well! :-)

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    • Posted

      Hiya...I am originally English but emigrated to Australia in 1977....so I am of mixed nationality...now living in Bali for twenty years. I remember the sixties fondly for the same reasons as you do. The clue that gave me the diagnosis...I'm a nurse, so I know how to find the cause of illness and thank the Gods for the internet. Then I found a great Neurologist, a friend who I confided in. Nurses don't make very good patients I'm told. They know too much. But that knowledge got me here. I was not satisfied with other medics explaination of my illness. I knew it wasn't just " nurses back or midwifes strain"...!!! I too have fevers now and then...not high but low grade....still an annoyance. Also dizzy spells not related to gin and tonics..!!BTW...I have found a site where you can order a TENS machine on line..Amazon ( just type in where to buy  a TENS machine )...on the first page is one on sale for $29.77 plus postage. Put the bricks down Edward and try to rest.....Hugs an all...G

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    • Posted

      Happy Monday. :-) You have a great variety of experience. Certainly makes life more interesting. I originally came to the Philippines when I was 21. I was stationed here in the Military. When I left here, I knew I would retire here. I didn't think it would be so soon.

      My fevers are normally low grade. Rarely above 38.2. Just enough to make me miserable. I found that if I use a fever reducer at bed time, I don't wake with fevers or night sweats as often. So, that's part of my thing now.

      Thanks for the TENS info. I'll order one when I'm in the US for holiday. I'll safe a ton on shipping.

      I feel a bit strange talking about myself like this. I almost never talk about my AS this way. Except with my dr and occasionally my family. It's nice to have people that know how it feels. We're not alone...

      I hope you're doing well.

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    • Posted

      Hiya...it's 1.27 a.m. here and I can't sleep. Had to take a tramadol tonight coz a bit too much pain to cope with. Had lots of stress lately so that may be why. Got that jerking legs thing....they tell me it's from nerve damage..who knows. Don't feel strange talking about yourself...we are a sort of family here...linked together by this awful disease.  Sharing is caring...G

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    • Posted

      I have a tens unit that I bought from walmart in Georgia but it doesnt work for me I could send it to you just find out postage cost I'll pay it and send it to you if it would help you

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    • Posted

      How was your day? We just got our power back. We had wind and rain from Typhoon Nida and they closed the current for 24 hours. It's so boring!

      I hope you were able to get some sleep.

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    • Posted

      My day was OK ish...spent three hours sleeping this afternoon...catching up I guess. Sorry to hear you have been affected by Typhoon Nida..It's so annoying when the power goes down...we have it here usually in a storm but often no reason at all...The problem here is we have to rely on electricity for pumping water and thats so annoying as there is no warning that we will be "powerless"...!!! We live in a remote area with power lines still hung in the trees....so there are many mishaps. Oh for a battery operated TENS machine. I am going to ask my daughter to get me one for my upcoming milestone birthday. Hope you are OK...let me know how you fare in the typhoon.

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    • Posted

      Yikes! I thought our power situation here was sketchy. We really should have buried power lines here, but they're still up and tangled in big rats nests with cable and "telephone" lines. Yes, telephone lines....

      But we don't have them hanging from trees. I certainly love how simple and slow things are here, but I miss modern living at times.

      We fared very well from the typhoon. It just dumped rain. My dog was a real pain, he hates to poop in his own yard, so I actually have to take him off my block to poop. Even in the driving rain. I put paper down for him and tell him to poop. He looks at me and laughs...

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    • Posted

      I agree with your thoughts on the simple life...but Oh for a good internet connection...and electricity that does not have gremlins in it.. I had a good laugh about your dog, thanks for that. I have one huge dog..( guard dog) and three tiny things...that yap and annoy me..I'd never have a small dog again unless is was barkless. !!  Even the chickens make enough crowing and cackiling...but at least they give us fresh eggs.

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