27 with AS looking for people to chat to

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Hey im 27 i have AS with grade 4 si joint disfuntion. The bottom of my lumber spine from s1 to l5 is completely calcified. I have 3 buldging discs a herniated disc and degenerative disc disease. I also cant feel the left side of my body and sometimes the inflammation in my eyes makes me go blind. I have been in hospital 6 times this year for extreme pain .

Its sad when your writing a list of your problems when you have to stop and think did i forget anything?

With all this i am normally a very happy outgoing person bursting with posotive vibes even when the pain is unbearable but the last month as i have been weaning off the steroids i have become a vegtable and no amount of stretching or posotive vibes gives me any releif. I dont want to up the steroids as i put on 20kg in a few months mainly fluid but im only 5'2 it destroyed me.

Im writing this because i feel like when i go to the doctors they are not realistic in their expectations of me.

No one is a harder critic then i am i dont beleive in quiting but thats just it when i write out everything thats wrong with me and i see some people cant even move from.one slip discs i think well s**t like maybe im not a failure maybe this is just what it is.

I dont know what my point is im kind of high on painkillers but im just sick of feeling isolated and having no one to talk to that understands.

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  • Posted

    Hi Kirsty hope you are feeling not to bad today.  I am 28 was diagnosed when was 16. In constant pain like yourself but legs my ankle knees and neck are the worse I had both hips replaced 2 years ago. I remember I put a post on here about feeling isolated. So your post caught my eye. Be good to be able. I'm always happy to listen 

    • Posted

      Hey darren thanks im feeling a little better today.

      How did you go after your hips were replaced?

      I know what you mean my left foot and knee and shoulder are sometimes more painful then my back i think i would just be happy if they cut my left leg off but apparently thats not a thing.

      Msg me anytime im happy to chat. Its hard being so young and everyone else is enjoying the best years of their life and im stuck trying to figure out if the pain is worth washing my hair.

      I hope your doing ok

    • Posted

      Glad you are doing a bit better it was ok after hips even tho they arc replace they still play up now and then which is weird.  Yea completely agree I find it difficult to socialise now as can't go out drinking cuz of medication. I just got into swimming which I'm really enjoying snd is the only form of excercice I can do with out being in pain. But just no your not alone and if you ever need s chat just send me a message to 

  • Posted

    Sheesh Kristy, when I read what your issues are, I want to cry.  I am 58 now, and although I've always had more body pain than other people, I was always able to workout often up until a few years ago.  I have a lot of body pain and my arms and legs tingle and go numb.  My eyes are affected as well.   I'm so sorry you are suffering so much, I can't even imagine the pain you must be in.  I'm assuming that biologics don't work for you?  So far, they don't work for me... it's going on 2 months with Humira, and I think I actually feel worse.  To lessen unrelenting pain, a hot bath can take the edge off, but I can't get control of my inflammation.  Does anything at all take the edge off for you?  Do you have support at home?  Pretty sure my son who is 23 has AS too, but he refuses to acknowledge it.  That's ok.  As you know, there comes a time when you cannot ignore it. You are very brave and smart to reach out for support here! xo

    • Posted

      Hi thanks for the reply

      Ive heard alot of people say humira is horrible im on enbre i have been for almost 3 months now and i know what you mean some days i feel worse to and then somedays ill get a few hours of normality and then i pay for it with a few weeks of agony.

      Im very lucky to have an amazing partner he is very supportive but it takes a toll on him he works 12 hour days and then comes home and takes care of me i was just talking to him last night about me going into respite care for a few weeks to give him a break but he wont let me.

      Your son should definatly go to the doctor sooner rather then later i wish mine was caught when i was a child then the damage on my joints might not be as bad.

      I hope you doing well today xx

    • Posted

      Hi April just read your post and are of a similar age I'm nearly 57 So I've put up with AS for 30 years. I too feel that apart from the joint pain feet/hands etc I suffer severe body pain. I can't even hang the washing out now or change the bed without unbearable pain and i seem to be getting worse as I get older. I've always tried to keep moving but some days are a struggle. Waiting to see yet another rheumatologist if only to see where I'm at. Everyone on here seems to have had such bad side effects with medication in reluctant to try any.

    • Posted

      Hi Gillian,  I'll list all the things now that noticeably help with pain if only for a short time:

      1. Hot bath.  If I take one right before bed, it helps reduce inflammation and I have less pain in the morning. Doesn't last though.

      2. Anti-inflammatory drugs - before bed WITH a bath is best. However, anti-inflammatories give me terrible acid reflux and stomach problems, so I can only take wen I am desperate. 

      Swimming doesn't help with pain, it may allow you to get exercise.  Hurts my neck  too much though.

      3. Nothing. Else. Helps.

      I'm going to take 1 more dose of Humira, then I'm done with it.  I notice NO improvement after 2 months, and I'm afraid of long term side effects. I have 3 grown kids. My husband has Parkinson's, although he can play tennis 3 x a week and work full time.  It's torture for me to sit in a chair for any length of time. I can't exercise anymore sad Please tell me what you have tried, and if any treatment has given you any relief? Tramadol just makes me sleepy (that's not bad, but pain remains)

    • Posted

      Kristy, your husband is a saint..hang on to him!  I'm sure you appreciate him.  Thank you for your reply.  Regarding my son: he is 22 and has had pain (in the AS style) for at least 7 years now.  Because I know that there is no cure, that relief with medication is iffy at best, and seriously damaging at worse, I've asked him to exercise in a low impact way to preserve his joints.  He is going to do what he wants to do of course because he is a young male in college with other males who DONT have pain.  He will try to keep up.  My family can't see my pain and mostly don't ask.  I know they love me but they don't understand how I feel.  It's nice to have a place to share.  Do you live in the USA?

    • Posted

      Hi April. I don't feel that anything really works. Hear does help. I dont have a bath just a shower cubicle but my fave thing is the wheat thing that I microwave then wrap it round my neck it really soothes but end up burning my skin coz I have it so hot 😕😕I play table tennis with my homemade table and that makes me move. I was an avid tennis/squash player in my youth but no more. My hands and feet hurt too much. It's my back that I'm concerned about just now as it's painful all the time. See what this new guy says in November. I'm in the UK anyone else from my part of the world. ?????

    • Posted

      My hands and feet hurt a lot too! Is that part of AS? I haven't read about that and my md said something like "I don't know what that's about!" What IS that about??  I live in California.  We are having a heat wave and fires right now.. ugh

  • Posted

    Hi Kristy I was only 26 when I was diagnosed and I'm now 56 so I do understand how you feel. I've never had a pain free day and have just learned to live with it which was the only advice the rheumatologist have me and take up swimming. As I'm scared of water that didn't happen. My hands,feet,neck,back are always stiff and have never been offered any useful pain relief by anyone. I sometimes wonder when I'm describing how I feel that people just don't believe me. I really hope that you eventually find something that works for you. Keeping flexible and even a short walk gives me a bit of a boost. Everything else has so many side effects im scared of trying them. The only people who understand are other AS sufferers and at least we have sites like this to share out thoughts. Take care.

    H was the advice

  • Posted

    Hi Kristy...I'm 71 and have had AS for more than half of my life. I live in a remote part of the world and we don't have the meds available here to help me. I have a wonderful neurologist who does her very best to help me but there are no Rheumatologists here to consult so mostly I go it alone. I use Tramadol and Amitriptyline ( low dose ) and a combo tablet of paracetamol/Ibuprofen at night. I have been a nurse for most of my adult life and have seen so much suffering in others and done my best to help them. Now I mostly sit alone everyday, thinking too much and wondering who to share my thoughts with. It would be great to chat to you...you can consider me your Grandmother cheesygrin. Just send me a private message and we can chat some more. AS is a lonely life sentence for us all as so few people understand our pain or our moods etc. I'm here for you...Hugs ..Gloria

    • Posted

      hey Gloria :-) i might steal you too as my adopted family :D Age is only a number afterall and i bet you have a hell of a lot better experience of dealing with AS than i do lol. Iv had it since i was 15 but was only diagnosed properly and not fobbed off as junior arthritis when a horse landed on me lol  I have to say tho I hate tramadol! hugs xxx
    • Posted

      Hiya...Geez a horse...my original injury was from a cow which decided to butt me in the "butt"....Why do you hate Tramadol ?  It is my only choice here as I can't take codeine ( allergic to it ) and do have morphine tablets but they upset my stomach. I use a "hot pack" made from wheat and soft velvet material which I put in my microwave..it's great. Also have a hot water bottle ( the only one on this island I think )..but it is a bit hot for this weather, Building up for the wet season right now and my body is complaining bitterly. One day it's my neck, the next it might be my knees and feet then my thoracic spine...telling my daughter this tends to make her suspicious of my symptoms....I can see in her eyes that she is doubting my complaints. How can we explain our pain when nobody understand it..???? It's not just the physical pain it's the anguish that goes with it...tearing our minds apart wondering if we will not be here tomorrow. cry How to wash our own feet is another nagging chore...I have a wonderful big corner bath fit for a party but I can't get in or out of it. I want to invent a scrubbing board that goes on the floor of my shower which I can scrub my feet on...good for massaging pressure points on the feet at the same time, For painful hands and fingers...I thought of a glove type thingy ( like an oven mitt ) which could be filled with dry rice or wheat and heated in the microwave like my conventional hot pack...what a godsend that would be. And while we are talking inventions...a tube of the same design for elbows and knees. Oh well, dream on Grandma. Speaking of that, I'm actually a Great Grandma....my mind is still very active but my body ignores that and gives me so much frustration. Anyone who needs a great grand mother...get in touch...I'm only a few words away...Hugs and love...G

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