My autonomic nervous system test came back as normal. Sigh. I have no idea what to do next, I'm at my wits end, I can't keep "living" this way, this isn't a life. I have been searching non-stop for two years regarding this problem, I don't think I have much more fight left in me. I am not a quitter, and I never have been, but I'm really close to giving up on this fight?
A lot of the symptoms of this disease feel like they are "affecting/damaging" your nervous system when in fact they are not. I hear a lot of people on this site complain of tingling hands and feet that believe they have MS. They are then tested and are surprised when their tests come back normal. Prolonged Pain might be what is affecting a lot people on this site. When we live with pain for long periods of time our tolerance for pain actually goes down. Our pain centers become amplified, the same amount of pain last year might not have caused you so much agony as it does this year. Also if you have the same area of your body hurting for long periods of time the pain can change and feel different from time to time. Are you taking any type of medication I like to call brain meds to quite your pain sensors? Gabapentin, Lyrica or Topomax? After a few months of being on them you should feel a difference. I have been where you are, I thought I would have to live with horrible pain forever, but with the correct medicine cocktail you can, not eliminate, but get the pain to a tolerable level. Keep pushing your doctors. I had to for 4 years! It's worth it I promise you. Good Luck!
@Tina just because someone's lupus wasn't shown in bloodwork doesnt mean its not there.... My AS has NEVER shown in my bloodwork. No elevated sed rate, ever. And I'm as close to vegan as it gets. I'm highly allergic to dairy and eggs and have NEVER eaten these and I only eat fish for meat. Still got AS. If you think docs are trying to sell us drugs, what about hte health food stores? Also trying to SELL a supplement..
I'm wondering the same thing as Nicki. Are you on anti-inflammitories? & or muscle relaxers? I've been dealing with this disease for over 20 years now & I know I couldn't make it thru the day without both. Norfkex is a great muscle relaxer that can be used whenever & shouldn't affect your studies. I take Celebrex but also Azathiropine, given for my crohns, but helps with inflammation in general. I also have a couple different pain meds I can use. Also Cymbalta, which is an anti-depressant, helps a person deal with the pain. I'm not sure chemically how it works. But it does. & a rheumy should be able to prescribe it. Please keep us updated on how you are doing! I wish you the best!
I feel for you really I do I have been there I do think pain is the problem to much pain in our life is no good after a while you start to think all sorts of things going wrong I know because I think the same I imagine all sorts of things I have had test for all sorts of things have come back normal . But one thing you must do is to stop thinking you can not go on .I know what i say to you is easy to do . But please do not give up the fight I am sure the day will come were you think glad I did not give up . I am an old pro with A.S for 43 years I have felt like you over the years but still here . I wish you the best & good luck..
I'm really sorry Robert, I'm having problems for years now too. I just changed doctors, all of them. I feel the way you do a lot of times, but remember you might get a good day. Find another doctor, I waited a long time befor changing but, I am tired like you are so, it doesn't make a differance for the wait on a new one because I'm in the same pain any way. Good luck to you, hope you feel better soon.
It's great if you can find "natural" medicines to help, but the "crap" we get from our MD's is given for a reason. Sure, it sucks having my immune system suppressed, but better that then have my spine fuse together. I take meds, watch my diet(see a dietician) and see a chiropractor, it's often a combination of things needed to help manage symptoms. Sorry to sound defensive, but it is frustrating when people think there is a cure all to a very complicated problem. Living with pain day in and day out can ruin your spirit and you may lose the fight in you, don't give up! I think many of us had to go to several doctors and through a lot of tests before getting a correct diagnoses. It is a long, hard road, and I am sorry you are feeling so hopeless, keep fighting, you are worth it!!!
Find a naturopathic dr. Near you. And start there. M.D.'s will more than likely just keep giving you crap that suppresses your immune system. Instead of that, go to a health food store and talk to them about supplements. If you eat white flour(or alot of sugar), you will hurt worse. Look into a gluten free or starch free lifestyle. Also, research the lupus recovery diet (book by Jill Harrington) I know someone who has no signs of lupus anymore because of this. It is for all autoimmune problems. We are what we eat.