New

Hello. I am new to the site but have been following for a few weeks now. I wanted to share my story in the hopes of some guidance.

In my mid 20’s I developed flu like symptoms that did not go away. I remember going to my doc and he ran tests. He told me I had an elevated EBV titer and ordered me B12 shots. Years go by and symptoms waxed and waned. Flares almost always involved muscle aches and knots and extreme fatigue, sore neck and sore ribs (costochondritis). Ten years later I saw a rheumatologist and have been seeing her since 1998 for what has since been diagnosed as fibromyalgia. I’ve had major flare ups over the years and have dealt with them with a variety of meds.

Almost 2 years ago I woke up with severe hip pain. Xrays showed a slippage of lumbrarsacral discs and my neck has arthritis. Also had major problems with sinus, bladder infections as well as a nasty bronchitis. I have been treated with multiple antibiotics and Medrol dose paks since that time. In the last 2 years my symptoms have gradually increased. I am in moderate to severe pain almost daily. I am so tired I can barely hold my head up and get easily winded. My ears ring. I’m lightheaded. I get pins and needles in my face and feet. I just developed thrush from the steroids. My neck/shoulder is so sore if feels as if I ripped a muscle. I am 54 years old but feel like 104.

Saw my rheumy last week. My muscle enzyme was slightly elevated. I asked her about a Lymes test because my husband reminded me of a huge bite on my leg from over 25 years ago. I had totally forgotten-did not see a tick. Although I can’t be positive, the bite certainly was around the time my problems began. It was not a bulls-eye rash but a large 4-5 inch, painful welt that lasted several weeks. The results of the test were negative.

I am at my wits end. I have to drive 4 hours this weekend to my daughter’s college graduation and I’m not sure how I am going to do it. I can barely walk. I don’t know if I should pursue further Lyme testing with my rheumy when I return or if this is all related to fibromyalgia.
Thanks for letting me vent. Any guidance appreciated

Hi, Bebe, and welcome! I do agree with Ljm. I would pursue the Lyme idea. Try to get your blood work sent to Igenex Labs in Palo Alto, California. They are supposed to give the most accurate results for Lyme.

Fibro is not considered a progressive illness and you seem to be getting worse and worse. You can have Lyme disease and also fibro too. You should be tested for lupus and other illnesses that have many of the same symptoms as fibro. It does sound like your rheumy is testing you but I still would ask. It's your body after all.

Also, I've read that steroids don't help with fibro because fibro is not considered an inflammatory illness. We have members with fibro but no inflammation in their blood work. I have several inflammatory illnesses along with fibro so anti-inflammatories do help me...with the other problems I have.

Here is an excellent link all about fibro and what to expect and also what medications are used to help with this illness.

umm.edu/health/medical/reports/articles/fibromyalgia

Also, be sure to read Fibro 101...the first thread on the forum. There is a lot of good info in there also. There is a link to pain charts. You can pick a chart that you like, print it out, and use the chart with a journal describing how you feel when doing things. Then, take the journal and chart to your rheumy and this will help them see what you are going through.

I do hope you get answers soon. Don't "settle". You know your body better than anyone.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Do let us know what you find out because we do care about you. Hope to hear more from you soon.

Sherrine

Istarted getting bad back, hip, and leg pain and it turned out to be ankylosing spondylitis. It's an autoimmune problem. I was put back on ibuprofen, Tylenol, and a muscle relaxer that made a significant difference in my overall pain. It's called Robaxin...generic is methocarbomol. The prescription read to take two tablet four times a day but I only took one tablet and it helped greatly with no side effects.

A year and a half later I started craving pickles and olives...right out of the blue. I have been eating quite a few a day since then and my pain has been cut in half. There is something in olives that works like NSAID's without the side affects. I talk about this in our Diet and Food Discussions threads. I'll pop it up for you. This is where we keep diet and food discussions on this forum.

I also take magnesium malate and vitamin D3. These help with pain and there are links about these in Fibro 101 so do check this out. Hope this helps you.

Sherrine