I have some luck with heat and exercise. I am a rock climber and I like to get out and work whatever muscle is hurting at the time. The harder I work it the better. It might be that I am taking my mind off it, but I don't really care, as long as I'm not sitting around moping and feeling crappy. As for the bipolar, I am depressed myself (and have been most of my life). I can totally relate to how hard it makes things. I tend to feel hopeless and I know that some of this is the depression talking. Keep hanging in there!
Rock climbing, are you kidding me? How can you possibly do that?
What kind of burning do you experience in your hands? Does it feel like a deep burn (ie: from a pinched nerve(s)) or does your skin itself burn (like a sunburn, etc.)?
My body is hurting just THINKING about it.
Oops guess we aren't allowed to suggest meds to others. Sorry, scratch that suggestion. It's just what I do to get by with occasionally using ibuprofin.
That's sort of what I thought at first too, but once I tried actually using the muscles it seemed to help. I can't do it on the days where I 'm really miserable, but now that I've started climbing a few times a week, the days where I am miserable seems to have decreased a bit.
1 Like
Hi fellow Zebra! *waves* I don't have the diagnosis confirmed yet but when I showed my rheumy my hypermobile thumbs and hands she said "Why didn't you show me that before?? EDS!" and started writing furiously in my file. I told her that and the joints popping in and out were normal to me. Then she said "but that's NOT normal!" then said I need to go to U of M for confirmation. Waiting for them to make me an appt now. Dr K told me it would take a while to get in. I'm less then an hour from Ann Arbor though so going to U of M is ok because someone will take me. I can't drive that far anymore. And yep hoofbeats are definitely for Zebras too. I just wish more Dr's knew more about all of it.I'm lucky Dr K did as I'm already seeing her for the fibro and osteoarthritis and didn't have to add another there.
I had the echo already. The medical practice my rheum is in has the stuff in their office. My heart was good so far. I think I fit into the HEDS type but I do have some vascular symptoms. I have skin issues too but don't have stretchy skin so I don't think I fit into classical. I see some crossover symptoms though so I really have no idea lol. I just hope they dont pooh pooh me at U of M. I hope they do the biopsy too as I bruise so easily, my veins are visible, my hands looks old and such.
I did find one good yahoo group so far and I read the Inspire boards on the EDNF web site. It's helped some but I sure would love a definitive diagnosis. I found one facebook group that's decent and accidentally joined one that I think was in Finnish lol. I'll look for the CEDA one. Thank you for the info.
I'm not sure if I want ring splints yet. I do beadwork though and they may help. I might even try to make my own but I don't do metal work other than a small bit of silver wire useage.
It sure is nice to meet a fellow zebra here. I joined the Ben's Friends EDS group but it has very few members yet. I read this one because I have fibro too, maybe as part of the EDS I'm not sure but it does help to have support! Nice to meet you!
Byrd feeder, was the prednisone for fibro or your other issue?
Ali, I want to add that although the pain in my fingers might not be the same as yours, I DO have a lot of pain in them. Feels like arthritis. Some days I can barely move the joints. And they swell up too.
Forgot to add that my rheumy said that irritable bowel syndrome is one symptom associated with fibro, and that includes stomach pain.
Okay, mbaldwin, I guess it is because I am having a lousy day and feel all sorts of pains and aches, or maybe it is because I am a wimp, but, honestly, to me, like I said before, how can you possibly go rock climbing? Give me a break. I admire you, really I do, but let me ask anyone else on this board, do you think in your condition you could actually go climbing? From what I have read, most people can hardly move, it is a disorder of the central nervous system, and every part of your body hurts, even the simplest thing, like getting out of bed, walking, bending, thinking hurts, and even on the days that you feel okay, it is still hard to walk, never mind, climb a mountain!! I'm sorry, but you have been mis-disagnosed. As anybody can tell you here, there is NO WAY and maybe I am wrong people, no way any of us could mountain climb in our condition. I'm sorry I sound so disrespectful, but if you can do that, you are okay. Sorry I am in such a lousy mood but I could not stop thinking about what you posted and it really made me mad.
Hi Friend,
I understand all too well. I have had fibro for three years (i'm 26), but have also been dealing with undiagnosable severe stomach pains, nausea, vomiting, diarrhea - and no relief.
Please, feel free to message me. I'd love to talk.
xo
Actually, that's wonderful! If you've found you can do it and it can help to feel better, then you've managed to win, in a way, by taking back a part of your life.
i have no idea, i hope i can take it because i dont have arthritis but i feel as if i do.
what exactly is EDS?
i just showed the ring splints to my mom and she ordered me some thank you so much!
who is your rheumy? i havent seen one yet and i need a good doctor to help me figure all this out!
thank you so much! it means a lot that you care
i'm sorry youre going through the same things its really difficult! and yes i always have milk and cream cheese in my house, cream cheese is the most helpful for my stomach. i also have tums near my bed incase i need it! and im not sure if i have it or not i feel if i did my doctors would have told me but i mean who really knows with doctors now a days. im pretty sure everyone on this site knows more about illnesses than doctors do. i actually was homeschooled last year however im going to try to do IB and go in half days next year. hopefully ill be okay but im not sure last year was a huge struggle. im unalble to do a lot of homework and got penalized for it. taking days off was also a issue because i missed too much to be able to pass the tests. its really difficult i dont know how to handle it anymore.
thank you! i wish you the besttt!
well, it feels like my joints are bruised and they hurt to move. my skin all over my body feels like burning so im not exactly sure whats wrong with my hands.
mine as well! yes i have that actually its awful! i hate itt
ill message you now:) i've had it for four years and im only 16, im hoping as i get older it will get better but im not sure.
xoxo
EDS is Ehlers Danlos Syndrome. There is a lot more info at www.ednf.org Basically its a genetic connective tissue disorder. A faulty gene causes the body to make bad collagen and we have collagen in just about every part of our bodies. It's the "glue" that holds us together. And yw on the ring splints. I've heard they help a lot. My rheumy is Dr Ruth Kozlowski in Milford Michigan. She knows about it but there are a few specialist like Dr Bradley Tinkle and Dr Francomano. Theyre too far from me for me to go to them though. There is a conference in August about EDS. There's more info on the conference on the EDNF page. And yw it does help a lot if we support each other and care about each other.
Thanks Petunia and yep the older I get the more painful it gets. Just have to keep on trucking lol.