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It began with the fingers of my right hand slowing and painfully clenching into a fist that would last for a few hours to more than a day and then open up to normal. Then about a month later, my knees would hurt. Then my elbows or wrists. Sometimes my shoulders. Very random. Never really long lasting, but quite painful while going on.

Went to my GP and mentioned the tick bite I got in the Spring. Lyme? Sure let's test for that. Negative. She suggested I see a rheumatologist.

Off I went and had the typical rounds of blood work. SED rate normal, Lyme negative, RA factor negative. In essence I was fine. Dr. said he thought I had early stages of RA and prescribed prednisone and doxycylene. The doxy is a antiobiotic that he said has been shown to slow the progress or even reverse RA. Funny thing - even though Dr. thought it was RA, I never had swelling or redness and SED rate was normal. No inflammation. After doing this for almost a year and getting worse in the process, I came to the conclusion that I needed to find someone else.

Off I went to another rheumatologist in another city. Been seeing her for about a year and a half and I really like her. She has been very methodical and thorough. Did not jump to a diagnosis right away though. Some concern raised about my kidneys and I was sent to a nephrologist. Many tests and scans showed normal kidney function and size, but still too much blood/protein in my urine. Told me to stop taking Advil or ibuprofins and stick to Tylenol.

At this point, last spring, I was told to take Tylenol 3 times a day not to exceed the max dose and a prescription for Lyrica. While rheumatologist suspected lupus (was starting to get positive ANA), she still thought something else was going on.

Last spring I had a crisis. The pain throughout my body was so bad I could barely walk or stand upright. Couldn't raise my arms over my head. Tired all the time. Couldn't sleep more than an hour at a time. Depressed. Ready to just give up. Not eating. Losing weight very fast. Then, my urine became dark brown. Off I went to the nephrologist.

Some concern shown about my weight loss since I had just seen him a month or so before. But what landed me in the hospital was my normally low blood pressure (100/62) had dropped to 90/58. After a few minutes nurse came in to check pressure again. Down to 86/52. By the time I reached the hospital, my pressure was 78/50. I was dehydrated and had hepatitis.

Taken off Lyrica and Tylenol immediately. A week in the hospital rehydrating and completely off meds and a week at home recouperating and I began to feel better. All in all, I lost 35 pounds in two months. I would not recommend this as a weight loss method, though!

Long story getting shorter now. In June I was prescribed Cymbalta and take 30 mg once a day. I began to feel better. Still had pain but more energy, a happier aspect, and was sleeping better. Last July I started an herbal protocol and have to say after the first six weeks I was feeling MUCH better. The bad days are much fewer, I am able to work until 4 or 5 every day instead of leaving at 11 or 12 or not going in at all.

I have another six weeks on the herbal route and then see the rheumatologist and have all my tests run again. At that time, we will decide whether to start on plaquenil.

I've been very active in seeking a diagnosis and treatment for what ails me. But I'm fortunate, I know there are a lot of folks out there without the resources and insurance to be as aggressive as I have been.
 

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It does sound like you have found a great doctor, and I hope you get some final answers soon. If you did have Lyme, the doxy would have taken care of that too so that's one less worry.

That must have been a scary time with the hepatitis and needing to be in the hospital. What type of hepatitis was it? I think Hepatitic C can cause many symptoms of lupus, and many rheumatologists will run that test while trying to rule in/out lupus.

Best of luck to you and nice to meet you. May you continue to improve from that low point you reached earlier this year!
 

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Hi Karen,
just wanted to say welcome and sorry that you've been through such a rough time.

I hope things get better for you soon.

Good Luck

Take Care

Cassie :)
 

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It began with the fingers of my right hand slowing and painfully clenching into a fist that would last for a few hours to more than a day and then open up to normal. Then about a month later, my knees would hurt. Then my elbows or wrists. Sometimes my shoulders. Very random. Never really long lasting, but quite painful while going on.
OMGs Karen... You just described exactly how I felt this Spring. My fingers were curling in too... My story is in Intro's.. I was diag with MTCD in August...
Just thought I would mention it...
Good luck with everything.
 

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Hi

Hi Karen,

You've been through a terrible time of it. I hope things are improving for you now and in the future.

Best wishes
Beci
xx
 
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