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*New Here* "okay" Labs, symptoms not "okay" So fed up..

Hi all! Im @ a point of severe frustration, hope I can get some thoughts...
Im a 36 yr old F. Since (roughly) 2008, I started having some serious fatigue (the kind where no matter how much/little sleep you get, youre still exhausted), major pain issues: Deep throbbing aching in lower back, lower legs, feet, hips, arms, shoulders. Sometimes my feet & hands swell, itch, red. Fingers feel fat/stiff sometimes. I get boils & pilonidal cysts frequently. Hair loss (significant amnt), rashes. Rash will appear at base of neck/chest, stay around a week & disappear. This happens a lot when I go outside for long periods, or when Im super stressed. At the same time, my pain is real bad, Ill get a boil or 3. Ive had (3) miscarriages in the past. Im always "sick", not flu sick, just a general feeling of not feeling well, stomach pains, fatigue, nausea, headache.

Ive been to atleast 4 rheumatologists over the years, always an elevated sed rate and/or CRP....Negative ANA. Negative for pretty much everything they test me for. *sigh*
MRI shows arthritis in lower lumbar, DDD, bursitis in hip, fibromyalgia. Those are my current dx.
It doesnt make sense, I feel theres something they arent catching, something under the radar...Im fed up, almost 8 years with feeling like this & nothing! I feel like these dr.s think im making it all up, but thats not the case at all.

Ive had different friends & coworkers suggest Lyme tests, Im not one to ask for a test, drs hate being told how to do their job.
Idk if Ive ever even been bit by a tick, but coincidentally around a few months prior to all of this starting, I was living in the south and my dogs got quite a few ticks from the new house/yard we lived in.
So? Anyone???
Thanks in advance!
1 Responses
1276940 tn?1564515084
Hi there and so sorry you are feeling this way & getting no answers! I know exactly how you feel!! I wish I had some answers for you but I'm afraid all I can offer you is support! IMO....this board is a bit on the slow side, when it comes to replies......but we all get caught up in the hustle & bustle of life!

As far as the Lyme test goes it really wouldn't hurt to request one. I tested borderline positive back in Sep last year. I also did not recall getting bit by a tick but still had a BL positive result. But I hear that Lyme disease is ROUGH and I only required one round of antibiotics and and a mega dose steroid pack and my symptoms were gone. So I honestly am not sure if it was really Lyme or not.

I am in the process of being tested for Sjogren's Syndrome. I go back on April 1st to go over my blood work results and a possible lip biopsy. Not looking forward to that!!

Anyway......again I am sorry I couldn't give you any insight but I just wanted to respond to you and welcome you! And I do hope you can start to get some answers. DXing autoimmune disorders can be a tricky and lengthy process!

Take care & do keep in touch!!
Lisa :)
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