Polymyalgia rheumatica anyone?

I have been suffering for years and have been diagnosed (and undiagnosed) with everything from fibromyalgia to narcolepsy.  Now a new doctor has started in my PCP's office and she actually took the time to listen to what is going on with me and how much worse things are getting.  I have now been diagnosed with Reynaud's in my hands and feet and she is pretty confident that I have polymyalgia rheumatica.

Anyone have any experience with this?  I know I am rather young for this but with my family history of autoimmune complications and my past medical history I guess it isn't too far fetched.

We are also still looking at lupus.  We did some more hardcore lupus testing in stead of just a screening plus rheumatoid arthritis, scleroderma, mixed connective tissue tests, polymyalgia rheumatica & other autoimmune/connective tissue tests, retesting all vits & minerals & thyroid plus some "poop tests" for c diff & some other bacteria & tummy issues. Results should be in next week. Lowered beta blockers because of severe hypotension (on them for migraines), added pills for fibro, adjusted migraine meds. Back in 3 weeks.  Doc was concerned about dehydration due to the amount of diarrhea I have been having and said no amount of Powerade type drink was going to replace what I was losing in electrolytes and it was probably making the hypotension worse.  I'm under strict orders to head to the ER at the first signs of dehydration or if the diarrhea continues even with the meds they are giving me (they are suppose to call it in I don't know what it will be yet).  My resting heart rate is in the 40's and when I stand up my BP drops to 80/60.  So that's been my last few days!  Instead of Lyrica they put me on Neurontin.  Anyone here tried that before?  I'm starting out on 300 mg three times a day.  I also take Topamax 50 mg twice a day.  Maybe I should just list my meds?

 

PRN (taken as needed for migraines)

Treximet 85-500 mg & Compazine 10 mg & Benadryl 50 mg taken together (this is a new treatment for me and I am still waiting on the prior auth to go through on the Treximet)

 

**OR**

Fioricet 50-325-40mg

Lomotil for diarrhea

 

Daily meds

All Vits and supplements plus Digestive Advantage IBS Formula Probiotics

Neurontin 300 mg 3x a day (for fibro)

Inderal 40 mg 2x a day (beta blocker for migraines- just reduced from 80 mg 2x a day)

Flexeril 10 mg at night for muscle pain

Prozac 20 mg

Topamax 50 mg 2x a day (for migraines)

Jolivette (birth control for migraines)

 

Ritalin 10 mg 3x a day (for sleep disorder- delayed phase sleep disorder)

Singular 10 mg (allergies)

 

I also have Vicodin from my surgeons office that I take when I need it from my stomach pain.  My stomach narrowed and I was in pain for 5 months and couldn't eat solid food and could just eat mushy foods.  After CT scans and GI scans and scopes the only thing he could see was I had some narrowing in the bottom of my stomach but he said that couldn't be my problem and dismissed it.  He finally did an endoscopy and stretched my stomach 2 weeks ago.  It has been much easier to eat since then.  I need to go in for my follow up with him though at this point I don't have much faith in his aftercare abilities.  He did tell my friend that took me to the procedure that I would need to have it done several more times before it would stay stretched out.  FUN!

Last night my left hand kind of curled into a claw and the muscle were weak and I had such intense pain but my hand was numb!  I had no idea what was going on!  I was talking to my Mom on the phone and she suggested running my hand under ho****er and it actually helped some but my hand was so sore.  It still hurts today actually.

Any thoughts or suggestions would be so helpful right about now.  This stuff is really freaking me out!

I'm not sure how much help I can be but I've just been diagnosed with PolyMyalgia Rheumatica so I can sympathise!!

I'm 28, so I know all about being too young for this stoopid disorder.

My hips are so bad that most mornings I can't walk, and my shoulders are getting worse every day.  I've been for x-rays, have just been for an ultrasound and am being referred to a rheumatologist in the next couple of months. 

Sounds like you have a totally full plate!  **sympathy**  PMR sucks ass.  I've been told by my doctor that large amounts of weight loss can exacerbate a preexisting condition of PMR, in other words if I was going to get it at 50, losing 50kg in a few months can bring it forward.  I'm not sure how true this is, the research I've done online doesn't seem to support that but thought I'd let you know anyway.

I'm taking an over the counter anti-inflammatory and painkiller until I see the rheumatologist.

Hope that helps somewhat, even if just to reassure you that you're not the only one.

Nic :-)