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
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.
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).
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.
Jillian You hit the nail on the head, regarding management.
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.
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.
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.
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!
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
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
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. ((::__)))
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
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.
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.
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?
I think that's an excellent way to describe it all. Maybe the next thing might be scaffolding Lol !!
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.
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 ((:::---)))
I am refereing to your enthesis explanation.