Fibromyalgia

The "test" for scleroderma (of which there are several types, I have scleroderma-diffuse), is the same as for Lupus, an ANA blood test.  HOWEVER, the test is not conclusive as the antibodies do not always show up, and for me, did not show for many years.  Firstly, I was not tested, and then, when tested, they were not present.  So . . . it's very much by symptoms, which in this case, unlike fibro, manifest themselves very particularly.

 

Scleroderma is a hardening of the connective tissue, and for some people starts with a restriction of the facial muscles, a tightening if you will, or for those with "diffuse," it manifests in the organs as the connective tissue surrounds organs (for me, it was my intestines and colon, which became paralyed).  The connective tissue later surrounded my lungs, resulting in COPD.  [BTW, this whole process took two decades]

 

Reynaud's Sydrome is a good first indicator of both illnesses.  Again, a fine rheumatologist is the best bet to look for symptoms and do the work-up.  There are further tests if there is the diffuse variety and the GI tract is involved--called motility tests where irradiated pellets can be swallowed and then monitored for transit time (mine took 10 days on the first test).  That took a GI Motility specialist, but the rheumatologist is the best first place to start.

 

P.S.  I take Baclofen for a muscle relaxor.

 

P.S.S.  The source of your pain may not be the cause of your pain, as there is a syndrome known as referred pain, which you may want to research.

Good luck, bonnie

Nicole,

I am so sorry to hear sweetheart that you have this illness at such a young age! You poor thing. I wish I could give you a hug. I have a daughter that is 13 and I am watching her because I see little things that make me wonder if she is getting this also. I have Chronic Fatigue Syndrom which was diagnosed first in 1991 because I got the "flu" and it wouldn't go away. My doc did some bloodwork to test for what he called "titers" in my blood. That came back that I had the epstein barr virus which is usually connected or the cause of CFS. I was diagnosed with fibro about 5-7 years.later. I have been fighting for years to get help. I finally asked my doc to refer me to a reumatologist. She has been very helpful. I would suggest as Sandy did that you see one too. They really are the best to deal with Fibro. I am to the point and have been for 6 years that I have to see a pain specialist too. I had my appendix rupture in 02 and got the bad infection with it that you usually die from. Anyway that caused me to get a lot of scar tissue called Adhesions. And I got a hernia from the incision. And have had that repaired 4 times. Along with some other surgeries. So darling, you keep fighting for the answers. Don't give up until you get the answers you need and the help you need. You hang in there. You will find many helpful and loving people here at disaboom.

Gentle Hugs,

Pam

Kat, Have you asked your doc about a muscle relaxer called Soma? It works well for most but there is a high risk of addiction if you happen to have an addictive personality. Stay well, and here's a trick I use when the muscles start giving me fits. Draw yourself a nice warm bath and add 1 cup of Saki. Soak for about 20 minutes or as long as you can stay in the tub, the turn on the shower an rinse with luke warm, not cold water. The Saki (rice wine) draws the toxins out of your muscles and relieves the spasms. Enjoy and let me know how it goes. Talk to you soon. Terry

Nicole, You need to find a new doctor. When you call around looking for a new doctor, ask them specifically if the doctor treats fibromyalgia. Some of your difficulty may be that because of your young age doctors may have a hard time with a fibro diagnosis. Unfortunately, the numbers of young teenagers diagnosed with fibro is growing at an alarming rate, its not just an old peoples disease anymore. But the first thing is to find a new doctor. Let us know how your search goes. Be kind to yourself and we'll talk to you soon. terry

 

Wow, you're so young to be getting this. I'm so sorry.  When I was your age I never had any energy.  After school, I just wanted to sit on my bed and chill. I've had the restless legs occasionally since I can remember, bowel problems, and have always had PMS and bad cramps.  Things slowly got worse over the years, with the typical Fibro problems. I'm 48 now.  I'm already on disability because of depression and anxiety.  I take Klonopin (generic) anyway, and it's supposed to help with Fibro.  I recently went to my doctor, an internist, with several pages of the things that have been bothering me.  He said he thought I had Fibro, even without checking the pressures points, as I had already listed them on my info  sheets.  He prescribed Lyrica, with seems to help some with my sleep and I seem to have more energy.  I'm not ready to run a triathalon, but I've been able to at least get some things done around the house.  I just painted my bathroom, and know that I'll be hurting for the next couple of days.  I would have preferred to go to a  rheumatologist, but most of them don't take Medicad or aren't taking any more patients, so it's good that at least my internist knows something about Fibro.  I know I need additional tests, as I have Hashimoto's Thyroiditis, but my doctor doesn't do the anything but the basic blood tests.  For now, I'll see what the Lyrica does, as I've only been taking it for a couple of weeks now.  I'm assuming you are insured on Medicaid, Famis, or  your parent's insurance.  You really should see a rheumotologist and find out for sure if you have Fibro.  They'll know the proper blood tests to rule out other things.  You may need to see an Endocrinologist, as thyroid problems can also cause depression.  I wish you luck, and hope you can get the help you need.

Nicole, at your age you don't want to take alot of meds,your young and Naproxen is the first step in meds for Fibro, I feel you need to go the web page fibromyalgia center.com and print that out and take to your next visit and talk about it as you have with us. you are very bright and I feel you will bealbe to do this for yourself,alot of us have gona years before they said ok it's fibro, Doctors don't like give this title to young people my daughters 24 and she's going through the same things even though they know I have fibro, she's done the same test as you have and a few more.It's just a very slow up hill fight that we go through everyday,I'm sorry to say it doesn't get any easier.Just know we are all here for you anytime you need us.good or bad just ask or tell us how you feel there's always someone who has gona through it.KEEP YOUR HEAD UP! gentel hugges;and may the Lord look over you beck