Thursday, February 17, 2011


I can't really remember when I first started having pain. The pain in my lower back has been plaguing me for many years. I've had problems with my joints before, but usually only when it's really cold outside. For that, I would just wrap them with an ace bandage and be done with it.

I started noticing my hands hurting shortly after my husband bought me an iPhone for our anniversary. It's a 3G and sort of had just come onto the market. So, I stopped "playing" on it and used it solely for calls. That didn't seem to make a difference. I can't remember if that was before or after our son was born in 06.

But, I do remember, that after he was born, I began developing a "rash" behind my ears (similar to what I had as a child, pre-pubescent) and on my face. Then it spread to my underarms and chest - which I didn't have as a child. I went to the doc and was told it was only seborrhea (sp) and given some cream and told to use Selson Blue. Well, when that didn't work, I went back and was told to do the same thing, but it had become infected, so they gave me an antibiotic. I was also experiencing a lot of back pain at the time, but I guess there was no putting 2 and 2 together.

Then, the pain started getting worse. My hips and knees and feet were horrible. I continued to walk, but my toes would get numb, but I kept at it, only to pay for it (not with sore muscles) for a couple days. I was given Mobic and told to come back, it could be OA. That he was going to do a bone density test. Well, as I showed up for my next appointment, the secretary some how didn't schedule it. By this time, I'd been seeing a chiropractor for nearly a year, because of my back, so I asked him at an appointment what could be going on, given my symptoms. He said it could be fibromyalgia.

So, at the next appointment with my Primary Care Doc, I mentioned it. I wish I hadn't. He tested the tenderspots. I had 15/16 of them. woo hoo (sarcasm) I now have fibromyalgia. Mind you, NO tests were done to rule anything else out, and because I have a broken lower back, spondylitis and psoriatic arthritis weren't even consiered.

So, I start a regime of different meds for fibro. The first was Lyrica with mobic. I basically got to a point where it wasn't working and I was distancing myself from the family. So, I found a new doctor. He ran test and my RF was high, so he sent me to a rheumatologist.

I walked in, she felt my hands, ran blood tests and scheduled a follow-up. My RF was still elevated, my Vit D lvls were extremely low. She felt my hands again and said there was no swelling, so it's not RA but only fibro and put me on neurontin. No one told me that I'd lose my sense of taste. That was bad. I ended up on something else along with mobic. But nothing was touching the joint pain I was suffering. My muscular pain and spasms subsided, fatigue came and went with the vit D getting back into my system.

Well, the new doc left and another took his place. SO, I went in and talked with him and the PA about my pain, the rash, etc. I felt like I was just talking to thin air with the doc and the Rheumatologist. I started doing studies.

The "rash" behind my ear resembles more pictures of psoriasis or sebhorrhea psoriasis than anything. The first derm I went to looked at me from 6-8 feet away and said nope, only seborrhea (more meds/creams). By this time, I'd been fighting the pain for 2-2.5 years. Could even be 3 yrs.

So, I got to talk to the PA. She agreed, my RF and rash indicate an autoimmune disease (gave me tramadol and another med for fibro that had an antidepressant in it), and scheduled a biopsy because the 2nd derm I saw (this was Jan of 2010 - so it'd been nearly 3.5 yrs now) would not do one. The results came back as a dermatitis that was caused by autoimmune disease. I went back to my original rheumatologist for her to feel my fingers, say no (RF was at 93 at this time), still only fibro. I left and cried all the way home. I wasted money and no one would listen.

I went to get my tramdol refilled, and saw the new PA at my doc's office. She ugh, more tears from me. She looked at my chart, said RA was not autoimmune and that my ANA came back neg, so my "rash" wasn't autoimmune.

I had given up. Decided to live with the pain until one of my sisters pulled me from my slump and I found a new rheumatologist who LISTENED to me. I got all my records and read thru them before I gave them to the new rheum. I cried for hours. My doctors thought I was faking it. That there could be no way I'm feeling what I was feeling.

I walked in, she talked WITH me. Not AT me. She wiped the slate clean and started over. This was June-July of last year. By this time, I'd become so bad, I couldn't walk to my driveway from my front door without immense pain.

She ran tests. Took me off all meds and gave me methotrexate and a shot of prednisone.

We are still working on getting the right combination of meds. As of December 2010, I'm on 15 mg of MTX a week, 4 tabs of sulfazine a day.

Things were working well until about 4 weeks ago. My depression is coming back in full force (maybe because it's hereditary) and the pain is unbarable. And, amazingly enough, the pain causes my "rash" to increase....

Thanks for reading.

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