Not sure if my doctor's on the right track

[rayneweather]

I am a 31 year old female and I recently saw a fibromyalgia/chronic fatigue specialist for a myriad of complaints including fatigue, headaches, joint & muscle pain.  He thinks I might have sleep apnea which would account for some of my symptoms but not all.  I have some of the pressure points for fibromyalgia but not a full 11.  He thinks I might have arthritis & ordered mobic for me; I haven't taken it yet as I'm waiting to hear back from him about how my migraine medicine (which I take almost daily) would interact with the mobic.  In doing research on the internet I'm kind of puzzled as to the type of arthritis I could have.  I doubt RA because my joints are not swollen or red @ all.  My joint pain comes & goes and generally doesn't improve as the day goes on.  However, I don't have any of the stiffness one normally associates w/ OA.  I was told years ago by a physical therapist that my knees are messed up - they hyperextend and the tendons & muscles connecting to it pull my knee cap in a diagonal direction instead of side to side.  My sacrum has been extremely tender to the touch for at least 15 years that I can remember and doesn't allow me to lay on my back most of the time.  There were many labs done (including crp, cpk, lyme titer, epstein-barr, rheumatoid factor) and haven't heard the results yet.  And the high heat (almost 100 degrees) the last 4 days seems to have made my joints hurt much worse, especially my knees, L elbow & L wrist.  Does this sound familiar to anyone and their symptoms?  I am pretty sure that I have more than 1 problem going on but it seems like my joint pain doesn't fit any kind of mold I've read about - the joint aches but actually feels a bit better when used and often the muscles/tendons/whatever around the joint ache, too, not just the joint itself (especially around my elbows & knees).  If anyone could point to me in a direction or let me know if they think my doctor's missing something, I would greatly appreciate it; I'm as perplexed as he is.  Thanks!!!

[jmbirds]

well i have alot of your symptoms , i have MPS myofacial pain syndrom trigger point  syndrom its simular to fibromyalgia i have a dangerously low VIT D 3  its the sun vitamin and i cna't be in the sun so  your symptoms could be vit d 3 get the blood test for this its also part of a thyroid dysfunction my endo said i'm on a synthroid  for a normal thyroid but i have hypo symptoms

[smittygirl]

Have a great vacation and we are here for you whenever you need us, anytime at all!   Safe travels.

Sue

[rayneweather]

Thanks for all of your wonderful comments.  The specialist was surprised that my primary doc didn't do any rheumatology labs.  I don't think he did a HLA-B27 test so I'll ask him about that next time.  I still haven't made up my mind about the mobic; I have a fear of taking new meds anyway and the fact that I can't take any motrin or excedrin migraine (I use one or the other or *both* almost every day) while on mobic I'm still unsure.  And I would also have to take it at night due to the likelihood of tiredness/dizziness and because it has to be taken with food (my thyroid meds have to be taken in the morning on an empty stomach & I can't eat for at least an hour).  Med compliance has always been a problem with me :-).  He wrote the rx as a "well try this & see if it helps" and I'm not completely comfortable with that.  I found out from my mom yesterday that I had a rheum work up when I was younger (maybe middle schoolish) because I was having a lot of joint pain.  It was negative at the time but my mom said she wouldn't be surprised if I do have arthritis; she has OA all over and my dad has both OA and RA (the RA was underlying until a treatment for his bladder cancer caused it to flare badly and now he has problems with it in his knees).  So it certainly runs in the family.  I went onto the FM/CFS forum and I definitely meet some of the criteria for CFS although the severity isn't always there.  So I don't know.  Hopefully I can get my sleep study done by the end of the month and get back in to see him.  He said he'll give me my lab report then.  And thanks for the reminder about keeping my own records, Sue.  I had a really bad experience with an endocrinologist so I know that all doctors are not created alike.  I'll keep everyone updated on whether I go ahead & try the mobic or if I want until after I've seen him.  Thanks for all the support and I'll definitely ask him about the AS; I did read about it on the Arthritis Foundation's website and I do have prescriptions for lumbar & sacral xrays.  Just have to get them done and with my vacation coming up on Saturday I don't think it'll happen until I get back.  Will let you know what happens.

[smittygirl]

Hi there,

Find out if they tested you for the HLA-B27 gene.   AS ( Ankoylosing Spondylitis) is yet another type of auto immune arthritis.  It can take up to 10 years for the damage to the sacro joints to show up on an MRI and if you have had this pain for 15 years any damage will show up.  I have had it for 4 years and mornings and night times are the  the worse time for pain and stiffness, and the more I move around the better I feel which is classic AS.    I have been on Enbrel now for 12 weeks and started to finally feel better by week ten.  Your comment about the heat really resonated with me, the last two days my hands, knees and feet are painful and swollen again, so I don't care what any doctor says, weather is a factor as far as I'm concerned.   I'll tell you what I tell everyone. I sound like a broken record but we are all here to help and support as best we can based ONLY on our own experiences.  The Arthritis Foundations web site helped me so much, there are over 100 kinds of the disease.   I also use the Mayo Clinic's website often, it is a good source of info.  I just reread your post and if I'm correct you have not seen a rheumatologist.   I think it would be a good thing to look into.  When you get your lab results back ask for copies so you can start your own file.   It took me going to 3 different dr's before being properly dx and it helps when you have all your blood work, radiological reports etc to show your dr.  Don't let them have the copies, make them copy yours!!!!   Please keep us in the loop and let us know how you are  progressing.   Welcome to the forum!

Sue
Smittygirl

[spastic]

Wow, your history is almost exactly like mine.  I was first dx'd with fibro and then it was taken away when the swelling of the joints started and the daily fevers.  I have Still's disease and it is a rare arthritis, it just took forever to get dx'd with it.  Do you have fevers or rashes of any kind?  I have on my profile all the info about Still's, your welcome to check it out.

Hopefully your labs will pinpoint the direction of a dx.  It takes awhile to get some of them back so hang in there and hang out with us here on the forum.  

Your Friend,

Ada