Medications

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I have noticed that almost all of us take different meds. Not the diazepam or painkillers, more about the drugs used to regulate AS. My RH doc, has me a little worried. I get fevers, groin problems as well as a few other things. She says that she does not understand why I get these symptoms. Yet when I do research, it's in almost every article I read, as symptoms. Any comments, suggestions-opinions about my RH doc. Figured this would be the place to start asking questions. Looking forward to hear from you all about this one. Any and all comments would be appreciated. Thanks

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27 Replies

  • Posted

    What are the groin problems? Usually indicates Hip joint is causing the pain.

    ask your doc for a hip X-ray. Also ask about some of the new bio drugs. Etanercept injection is very helpful for back pain. Also back brace helps a lot very comfortable designs now easy on easy off. I wear several different types. Keeps me stable. 

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    • Posted

      OK, dont be mad if I sound rude, please, not trying to be disgusting. But I get shooting pains from mid abdominal muscles into my testicles. Almost like a hernia, been checked it's not. Have problems going #1 & #2,. It's like the muscles won't respond. Not kidney stones, my Dad gets them and it's not renal colic. No pain in trying to go, just doesn't work. Sounds like a nerve issue to me, we should all know what that is by now.lol. Not a joke but nerve pain is pretty specific. Hip pain, numbness. Gotta be nerves! Back brace might be something to try, as I still do physical labor. And I've had a SI joint and lumbar MRI, nothing obvious but I know with the back especially pain and damage don't necessarily go hand in hand.

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    • Posted

      With all your injuries I don't know how you can still work especially in a physically demanding job. What the heck happen to you to have such a list of problems. I sounds like you fell out of the sky. So very sorry ! I was hit by a drunk driver and totally messed me up for life. 

      I had had the same pains that you explained but not in the testicals, the pain it was in the pubic bone and groin. Different sex and no u were not rude sounds painful.

      they thought it was a hernia and it was not. 

      So after a few years of searching I finally suggested that someone plz xray my hip and that's when it all started. OA in the hip.

      By the way they did hernia surgery and found no hernia. It took months for the muscles to heel. Yet no one held the surgeon accountable.

      i gotta a million of em,

      miss you at the irritating annoying things post you have 36 votes.

      Hope xxxxx👀👍

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    • Posted

      Same thing..in the groin area, that describes it better. Same pain. yup, thought it was a hernia. My SI joint looks good, but i think it was only an xray, also had a few lumar mri. They don't look horrible....but I swear it's compression. Gotta be in the si joint, something.

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    • Posted

      Just looked at it. Sad topic for 36 votes. lolol.  Funny thing, he is going out of his way now a little. We r gonna sit down and I'll explain. See what happens from there. I don't have the patience if he doesn't want to be a part of this. I'm stuck here, so...up to you kinda thing.

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    • Posted

      Yes I agree a sad topic and yet this is what we face more often than not. 

      Everyone is in such a hurry. They don't stop to see at all! 

      I hope you have a good talk and work things out. You sound like you have reasonable experience to have a very effective conversation and hopefully come to a sensible understanding.

      Hopexxxx

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  • Posted

    There are very varying abilities with Doctors, and even if their knowledge and experience is good, their 'bedside manner' may not be.  Althouhg it IS very personal, try not to take it that way and just KEEP asking and trying to get answers and research too.  The most frustrating thing is when yuo can not tie all your ailments in to one thing nor do the Specialists even care to look for links, it ends up being your own efforts.  Don't give up!  (I need my own advice too).

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    • Posted

      lol, taking your own advice, yup I can relate. And I have heard more times than I can count, you are your own best doctor. And yes, I am trying not to take it personally, but my mind is starting to feel like Icarus getting too close to the sun. If you know what I mean. Sorry but I am a philospher at heart. I'm tied to nature and can always see the way of things. As for myself, blind as a bat.

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    • Posted

      Ahhh so much to learn.  Being unwell and with a disease that will not 'be cured' is another test.  I too beleive in the 'laws of nature'.  Practise make perfect!!!!(((::--))))  Regards Doctors/symptoms/treatemtn I am very grateful for info available on websites (though careful which to give credence to) and bring ideas to the doctors.  They have a duty of care and standard of care to alleviate pain amoungst other things.  So your doctor cant just dismisss your syptoms.  One day I will get to the root cause so I can hopefully take less medicines, it is such a viscious spiral.  You sound like you are on a big learning curve too.  ((::__)))

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  • Posted

    Read up about fibromyalgia symptoms also.

    With my AS and fibro I don't experience fevers, so why do you think you have fevers and what are some of your other symptoms?

    If I start to get a headache and pain somewhere building up, I take 2 Panadol osteo and it goes away reasonably quickly, especially if I stop what I'm doing and go have a bit of a rest for a while til it subsides.

    Its about listening to our body and learning about how much we can do and can't do. If I overdo it then it will cost me the next day, pretty much.

    It really has been a life changer for me as I've been a really active person all my life (I'm 54) and the more I did, the more I took on.

    Now I'm having to slow down nearly to snails pace it seems, and got to learn to use my brain more now and not my body.

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    • Posted

      I can feel feverish out of nowhere, few hours later it fades. I have seen it mentioned in my research several times."Unexplained fevers" My main symptom is Enthesitis. That is where most of pain originates. Double vision, light sensitivity, fatigue. And I'm anatomically incorrect, (shifted rib cage) busted clavical, ribs, cervical vertebrae, compressed sub-clavian vein. Had a C5-C6 fusion and the root nerve is damaged. I believe I had AS before but the fusion kicked it into overdrive. If your wondering how-sports injury 25 years ago. They thought I had nerve damage in my arm but it was in my neck. 25 years undiagnosed, hence the AS.Though I do have to admit I don't know as much about fibro. as I do the AS. Well i think I know alot but it's all subjective and I'm not a Doctor. So I have to take things into consideration. BUT between Hope, Kay and yourself. I feel like I'm learning much more. Your last sentence there says alot. Brain more than body. I think that is what drags me down the most. Feel like absolute %$#@, but my brain is firing away. Not that I mean this literally, but sometimes I wish they were at the same speed. Feel like crap and wanna rest. My body needs-begs-demands to be slower but my mind never slows down. As you can tell I'm pretty energetic, well I USED to be. I could be on my feet 18 hours a day, now I start work at 8am, and fall asleep at lunch. Get home at 5 and I'm done. By Friday I feel like a bus hit me. And on Sat. I take the methotrexate. One word for that-blah!

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    • Posted

      You have been on here for a few months. I have 1 question, how do you complete your user profile. Can't figure it out. LOLOL

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  • Posted

    Hello, I also get low grade fevers often especially at night. During the day if I try to stand for more than a few minutes I sweat so much that I have to keep a towel handy. My clothes get so wet. I also get groin pain which is probably from the damaged sacro illiac area. My feet hurt too, as do my hands..I have sores all over my body which have been diagnosed as a type of psoriasis. Let me know if there are symptoms which you have which could be unusual...I am sure many of us will also have them too...The doctors and medical specialists just don't know what we go through...This disease is only recently recognised so many medical people have never heard of it....nor do they really understand it. But we do...I hope some specialists read this forum...they might learn something.

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    • Posted

      I can get the fevers at anytime day or night. I wake up 2 or 3 times a night to change clothes cause I'm soaked. Yes I get the groin pain, my feet and hands hurt, well I hurt everywhere. I have Enthesitis, look that one up if you don't know about it. Nearly drove me crazy until I found out what it was. I also get sores in one area only, around my elbows. Doctors said they had no idea what it was. A buck gets 10 it's plaque psoriasis. Be well, Gloria, talk to you soon

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    • Posted

      I have Enthesis too (read it on my xray and MRI), I have read about it but any thing you will share would be gr8
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    • Posted

      Thank you for your help on this...I don't feel as alone now. Will look up Enthesitis in a moment...The sores I have are everywhere there is pain...arms, backs of knees, neck, shoulders and back and rear end...it could be from sweating so much....but it looks different to a heat rash. It looks more like chicken pox...!!  Two of my kids have psoriasis also....but it looks different to theirs. Dunno....will keep dabbing on Betadine anyway.

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    • Posted

      As you may already know it is the swelling of tendons and ligaments that connect bone to bone and bone to muscle. Technically we MAY not have any joint damage, but it's why your muscles ache and the joints hurt. That's why everything hurts, your screwed. Pardon the language I sometimes act like the drunken pirate, not around kids, i know when to turn it off, but it helps to make the point. When the tendons and ligaments hurt, you'll hurt for no reason, just sitting there, because they are swollen. And when you are active they get "abused" because now your trying to make them, well, do what there supposed to do and they are already stretched to the limit. They are not a part of your body that does well with inflammation. They are small rather fiborous, meant to hold everything in place. So when they are swollen nothing is in the right place or is not operating in the proper fashion. That's why your gait will change, writing is difficult, posture changes. It effects literally everything. Rather nasty, but when the glue melts how do you keep the tower from collapsing. I'm sure any doctor would argue with me but I think it's a pretty good way of explaining it.

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    • Posted

      Gotta ask, could these be hives. Do you have any know allergies? And did it start after you started any medications, say...as far as a month after any new meds? May not be an allergic reaction, but it could be an intolerance or sensitivity to something your ingesting. Doesn't sound like anything from contact, maybe you can't digest something and it's working it's way out of your body through your skin. Lastly, Is it on the bottom of your feet and the insides of your hands?

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    • Posted

      I think that's an excellent way to describe it all. Maybe the next thing might be scaffolding Lol !!

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    • Posted

      It's not hives...more like small boils. I do have allergies. Not on my hands or feet. I know that one and it's nothing like it.  It could be something which as you say..is working it's way out thru' the skin....mainly where I sweat and have pain. As AS is an auto immune disease I guess it will affect the whole body in different ways. The skin, being the largest "organ" of the body...makes sense it will suffer the same inflammation as my bones and tendons. I have styes in my eyes also...little infections keep cropping up. Urine infections also could be a sign that the bladder is inflamed too. I guess it all adds up to the big AS eh....Thanks for your advice will try to build up my immune system.

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    • Posted

      Sure is!  THANKS.  You have made me RE interested in understanding that side of the pain.  Might help in the 'understanding' sphere that has to be dealt with in day to day encounters.  You got me researching.  Knowedge is power ((:::---)))

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    • Posted

      Small boils, do they gradually rise to the surface and open? It's where you sweat-I'm pretty sure that- that is sweat working it's way out of your system. Your not actually prespring as well as you should, therefore the sweat will work it's way out. Sounds like pores having a problem. I have seen this before. Could be caused by alot of things-a med your body does not like, heavy metals, how's your sugar intake. Too much sugar not enough clear fluids? Think about this one, try to remember, look for the pattern, and the timing. Lemme know how it goes. urinary tract infections, will hold things in, then distribute through blood stream and try to escape another way.

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    • Posted

      hi Gloria went looking for INDI and found you too.

      i am so sorry that you too suffer fro all the pain you describe. I do too! It's from a lot of pain my body gets overwhelmed and reacts to the pain as my brain says I'm busy can't just sit down. 

      Can an you take MTX LOW DOSE. It has really helped me in the past with FM  & P. 

      Psoriasis I have had since a child so if you need to know how to help you P. All ya gotta do is ask I got all the treatments you could imagine I need a hard hat to open my closet full of psoriasis creams, lotions, soaps and light. What type of P do u have ?  it is an auto immune disease. I also have psoriatic arthritis

      Interesting to to find you here. PM ME if you have a P flare and want to get it under control before you go on VACA. 

      HOPE xxxxx

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