New here- Need some info please :)

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Ann07
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/28/2008 3:52 PM (GMT -7)   
Last December I had a horrible viral illness that caused vomiting and the intestinal issues along w/ a high fever. Everyone in my family got it as well. All of them had some joint pain and "aches" but theirs went away in a day or two and mine chose to stay. I've been to countless doctors and some have said I have reactive arthritis and some say Fibromyalgia. (can't spell) I am seeing a new Rheumy at the end of November for a third opinion. (that's just a third opinion from a Rheumy not counting the regular doctors I've seen) The weird thing is that I get joint pain all over the place and then it can stop for a week or two and I think "Oh I'm getting better!!" and then it comes back on sometimes worse than it was the time before. I did test low in Vitamin D but my blood work otherwise shows nothing. This started almost immediatly after I got sick in December of last year. So far I have pain in my shoulders, wrists, fingers and I have horrible horrible stiffness in my ankles when I wake up or if I've been in one position for too long. Sometimes I wonder if I'll even be able to walk. Also sometimes I feel like my whole body is tightening up when I'm trying to sleep and I get so uncomfortable that I can't hardly sleep at all. Last week I barely slept as I was in too much discomfort. I have no visible swelling either. They've had me on some stuff like Diclofenac, Mobic and Celebrex. Those really didn't do much to help. They did mess my stomach up though! ;) So I was curious if any of this sounds familiar - can it come and go? Does it get worse for you when the weather is cooler as when it gets cold I hurt even worse. Do you think this sounds more like Fibro than RA or arthritis? I don't understand the tightening feeling I keep getting at night. It feels like my body is trying to force me into a ball. Thanks for any info! I cannot wait to meet this new Rheumy!

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/28/2008 5:34 PM (GMT -7)   

Ann, I am so sorry you have been suffering so. I understand your aches and pains because I have a type of arthritic disease that also flares as you describe. It took a long time and the proper medication to get it somewhat under control.

Your description of how your illness started and the symptoms that ensued sound like reactive arthritis. There is excellent information about reactive arthritis here: Spondylitis Association of America. At their home page, go to about Spondylitis and read the information about reactive arthritis. There are multiple pages. One will list the medications that are used to treat it.

I don't understand why you have had to see so many different rheumatologists. Did the first two have differing opinions and you are trying to "break the tie"?

Cold weather really impacts my arthritis and my joints. I started wearing long inderwear in September - LOL.


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


Ann07
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/28/2008 6:20 PM (GMT -7)   
Thanks for your reply and the link! :)
Well the first Rheumatologist said she felt I had Fibromyalgia but she didn't even do that whole exam where they push on certain points to see if they cause pain. I felt she just blew me off w/ my symptoms. She also said that maybe I had the reactive arthritis but she says that is over with w/ in three months of the illness? The other doctor (who I later found out was an Internal Med doc w/ a specialty in Rheumatology) said I was the poster child for RA as I had a baby three months before this happened and that most likely that triggered this. Well the next visit I walk in and he says my blood work is normal (except for the vitamin d issue) and that he feels there's nothing wrong. He also said anything other than TYLENOL would be overkill as the blood work shows nothing is wrong. :( Then he has a nurse call me two weeks later and offers me Lyrica. So I guess he felt maybe it was fibro related too. I never filled that rx because I don't really feel that's what I have. So now I'm going to Emory University for more answers.

retrn
New Member


Date Joined Sep 2008
Total Posts : 16
   Posted 10/28/2008 6:50 PM (GMT -7)   
Sorry you're having such a tough time getting a definitive diagnosis-that is often the case.  I was wondering whether you might benefit by seeing an infectious disease Dr. as you had that infectious history in the beginning-maybe you picked up a parasite or something-might be worth a try just to be sure.  Hopefully, the rheumatologist at Emory will be helpful.  It seems reasonable to be sure of what is being treated, if possible before you go on some of these problematic treatments.  Good luck

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 10/28/2008 7:11 PM (GMT -7)   
Hi Ann,
 
Mine also started out with a virus and a few weeks later my knee pain issues started. The first visit with the primary care doctor issued all of the testing such as Lupus, Lyme, RA etc (all normal) from there I went to the rheumy who suspected something like a virus but never said reiters.  The doctor thought I had fifth disease initially since I worked with children, however I tested negative and after like you said three months is the waiting period for something like that, this is true.  We waited a full six months for me and I was tested twice, both times negative.  It will be four years this Novemeber since I first went to the Rheumy and I don't have reactive arthritis, I have RA and it happened after I came down with a virus.  After my knees it spread to my hips and hands and I would get the redness and tightness in my hands that would last all day instead of going away after I would wake up.  It reached a point that stairs were not an option sad
 
I also started out on NSAIDS, even Celebrex and none of them helped..from there I went to Plaquenil which was a Godsend!! I also started the Methotrexate..I do have to say that my joint pain never really goes away per say like your does so I'm not sure what to say about that.  I'm surprised the doctor didn't try any of the other methods like the Plaquenil or at the very least prednisone to see if it helps??? Prednisone is the gold standard and if it works fairly quickly that is pretty much a giveaway that you have inflammation in your joints.  The only time I feel no joint pain and have a normal energy level is with prednisone but my doctor rarely prescribes, only in emergencies.
 
I hope you get better results from the new rheumy because you don't have to have a positive test result to have RA..I have never had a postive result, yet I'm on Enbrel, and  if I go down on my Methotrexate dose, I can hardly get out of bed.  I tried this a few weeks back, thinking I didn't need the full eight pills and was I wrong!!!
 
Like Ides, the cold weather is my worst enemy! I'm really dreading Winter, because my joints get very painful and sore.  Last New Year's Eve, I went to an event that was held outdoors and the temp was below 32 and my husband ended up carrying me to the car because I couldn't walk..my hip joints felt frozen in place.
 
I wish you the best in getting the treatment you deserve, and hopefully this will be your last rheumy!

Ann07
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/29/2008 5:00 AM (GMT -7)   
Oops! I forgot to mention that my primary doctor (the first one I saw when I was not feeling well) did give me a medrol pack that lasted like a week and it did WONDERS. I felt like a new woman. But when I told her that she said "well everyone feels good on Prednisone/Prednisolone." Then she told me that people shouldn't stay on that for long periods and she didn't want to refill the rx because of the potential side effects. :( But it did help ...A LOT. Thanks for the reply! I will say the pain/stiffness in my ankles never leaves. It's always here. But the pain in my shoulders, knees, wrists and fingers all vary and sometimes I don't feel anything and then other days it's awful...

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 10/29/2008 6:31 AM (GMT -7)   
Many people take prednisone at low doses but the Medrol is not a good idea to take it back to back..I did this and had horrid water retention from it! It was a bad idea to say the least.  But if a rheumy told you that everyone feels great on pred, you need to move on to a new one.  Also, if that rid you of your joint pain and that didn't give a doc a clue and you have been returning for say months presenting the same symptoms it is obvious you have some form of arthritis brewing.  I have flares, where it gets to the point that not even my Enbrel helps me out, and after I had to go off the Plaquenil, I was in a bad way, but I never have 100% feel good days at least not anymore, not even on these crazy toxic meds, although you would think a person would.  Maybe for you the in between times are down times and when you hurt, those are your flares, everyone is different.

Ann07
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/29/2008 10:27 AM (GMT -7)   
Yeah it could be that on the "not so bad" days I think it's such a wonderful thing to not be in debilitating pain so I almost consider that pain free day. But honestly I've never felt "well" after this illness in December except that time I took the Prednisolone. My primary doctor wants the Rheumy to "try" Plaquenil. .

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 10/29/2008 11:00 AM (GMT -7)   
Please do your best to really push for the Plaquenil..I was on it for two years but after that my vision test came back positive for the plaq toxicity and I had to give up my plaquenil.  However, I highly recommend it!! It helped so much with my energy level and joint pain, although it takes some time to kick in but when it finally does, you should feel good on it.  At least I did, and I know there are others who had the same results.  I can't say enough about it, and I really miss it, and I never thought I would find myself saying I miss an anti-malarial..crazy tongue  but at this point my rheumy is trying to get me back on track because I seem to be struggling with so much joint pain.  I have found now that I am no longer on it, I have more joint pain and other strange symptoms that the Plaquenil covered up nicely, like skin rashes and sun issues etc. So do your best to get the Plaq smilewinkgrin

nuttynurse25
Regular Member


Date Joined May 2008
Total Posts : 35
   Posted 10/31/2008 4:41 PM (GMT -7)   
WHEN MY RA STARTED TWO YEARS AGO IT WOULD SEEM TO COME AND GO AS YOU DISCRIBED..AND WHEN IT WOULD CAME BACK IT WAS WORST..i WAS DIAGNOSED THIS SUMMER WITH RA..oNE YEAR AGO I HAD HIGH SEDRATE AND MY WRISTS AND HANDS WERE HURTING MY FAMILY DOCTER TOLD ME THAT IT WAS CARPEL TUNNEL....sO, WHEN I HAD THE TEST DONE THIS MARCH IT WAS NEGATIVE..SO, THEN MY FAMILY DOCTER RAN SOME TESTS.. MY SEDRATE INCREASED AGIAN AND I HAD A RHEUMOTOID FACTOR..nOW THE PAIN IS ALWAYS THERE.BUT ANYWAYS i HAD TO GO TO A SECOND RHEUMY AND SAID THE SAME THING i HAD RA..hE SAID THAT IF i DIDNT HAVE POSITIVE BLOOD WORK THEN HE WOULD RUN MRI"S...sO MAYBE yOU CAN SUGGEST THIS ALSO...DIANE
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