Introduction

Welcome Introductions
1

Hello everyone. I'm new so I figured I should introduce myself. My real name is Anna. I'm African-American and 38 years old.

Way back in June of 2009 is when my problems with muscle pain, muscle weakness and fatigue began. I made my way to the doctor’s office in September of that year and the testing began. I’ve been tested for Lyme Disease, Lupus, Rheumatoid Arthritis, Multiple Sclerosis, Myasthenia Gravis…we could be here all day. I’m so used to hearing that “everything’s normal” that I honestly didn't think they'd ever figure it out.

Besides Post Traumatic Stress Disorder (PTSD) and Hypertension (High Blood Pressure), I’m pretty healthy. I could stand to lose a few pounds but who can’t. Sadly enough, I did end up losing 45 pounds in 2011 but could barely move in 2012 so I gained most of it back.

At the beginning of 2013, I started making some changes. I became a vegetarian, lost a little weight and began meditating regularly. From April to June of 2013 I guess I went into a little remission and had no symptoms. Unfortunately the muscle pain, weakness and fatigue returned.

Another trip to the doctor’s office and he asked me “Where’s the pain?”. My reply “all over”. He looked at me and said “Fibromyalgia”. Then he said it could be one of the medications I’m on. So, I stopped taking the medication and the pain remained. He ended up sending me to another Rheumy (my first one left state) who basically looked at my chart and decided that I'd already been tested for everything.

He diagnosed me with Fibromyalgia, which I expected at that point. He said “the good news is you’re not going to die from it. The bad news is, there’s nothing I can do for you.” He then went on to tell me how there’s no cure, the medication hardly works. He mentioned neurotin and informed me that I could get that from my therapist’s office and that my family doctor could send me to physical therapy. And that was it. Well, that and the fact that he kept apologizing because he couldn't help me.

At that point, I went back to my family doctor and he started me on Lyrica. It did nothing for me. At that point we decided on physical therapy which I've been going to since October of 2013. I had my first session (assessment) October 16th and was told that not only do I have Fibromyalgia, but I also have Chronic Myofascial Pain, TMD and Plantar Fasciitis. My body was also unaligned.

PT has helped some but I'm afraid that overall I still feel like crap. My fatigue has gotten worse. In fact, my physical therapist thinks I need to get a sleep study done and mentioned narcolepsy. Basically, I can't stay awake, no matter how much sleep I get during the night. I've tried taking naps and it refreshes me for about an hour and a half and then I'm ready for bed again.

When my fatigue is extremely bad, like right now, I can't think and become nauseated. I feel like I have a virus. My back is also killing me right now and has been for about a week. My headaches went away for a couple of months but are slowly coming back. I'm always cold but interestingly enough I've been having night sweats really bad at night.

I should probably end it now because this is turning into a symptom list...lol.

2

Just an FYI, I have had night sweats for about 10 years. That is about how long I had weird little symptoms. I was told early menopause and I wad only 32. Turns out I have Rheumatoid Arthritis along with a few other autoimmune issues. Once I started meds for the RA and my immune system is a little under control my night sweats have stopped. I only have them when im in a severe flair. I also had negative blood work but have a great rheumatologist who recognized my symptoms as being seronegative RA. Point is if you aren’t feeling better or think you have more issues work to get a rheumatologist appt until you get some relief.
I hope you get to feeling better.

3

Hi Anna

Ask about water therapy. I love it and it helped a lot was not as hard on me as the physical therapy. Fatigue is my worst symptom. I look forward to getting to no you.

4

Thank you Angela. I try not to complain. The good thing (well, it's not a good thing actually) is my older sister has a rare neurological disorder that causes pain so she understands what I'm going through. I really don't talk about it with anyone else. Most people don't even know what Fibro is.

5

Thank you MrsK. My sister and I were just talking today about it sounding like something else was wrong with me. And the way my back's been hurting for a week now has taken it's toll. I'm trying not to go to the ER but it's something that might have to be done by the end of the week. As for the Rheumy, I'm not even sure if my old one still considers me a patient or not. He basically closed my case after he diagnosed me with Fibro and sent me back to my family doctor.

6

Thank you purplebutterfly. I'll have to look into water therapy. I'm pretty sure my physical therapist has a list of places that offer it. Fatigue normally isn't a problem unless I'm in the heat. For some reason, Summer is the worst for me fatigue wise. So, I'm not sure what's going on with this wave I'm getting right now.

7

Well Anna. You just joined the right group. Sounds like you fit right in. Over and over, test after test, we all seem to get the same answer. We want something definitive, but we get the same answer; fibromyalgia. Mine has been going on strongly since about 2007, diagnosed in 2008. Been through many doctors and tests.

My doc (she has fibro) is getting me started on some treatment called "myofascial release". I know nothing about it yet, except she loves it. So, I'll let you know how that goes.

Does sound like you should use a machine for your narcolepsy or apnea.

See you around!

Kitty

8

Thank you Kitty. I'll be contacting my doctor's office regarding getting a sleep study done.

9

Thank you TinaWi.

10

Welcome Bast 75, as Kitty says we tend to go around in circles trying to get a diagnoses and as well trying to find things that will make us more comfortable. I was initially diagnosed about 24 years ago by a doctor replacing mine when she was on holidays. When my doctor came back she didn’t believe in fibromyalgia, more tests no results. About 18 years ago a new doctor diagnosed me with “just” fibromyalgia and said I would just have to live with it and gave me pain killers and anti-depressants to resolve the “other” problem I had.



I got deathly ill 8 years ago with another disease, and I couldn’t tell what was fibro and what wasn’t. It took me a long time to recover and to go back and say these are all the problems I’m still having are they fibro. More pain killers, more tests. Eventually she prescribed Lyrica which I couldn’t tolerate. She then prescribed Gabapentin. The Gabapentin does help the pain and I expect that if I could tolerate a higher dose it would help more.



I take Elavil, gabapentin, anti-depressants, and use T3’s for the muscle pain, it does help. Unfortunately nothing other than sleeping several days in a row seems to help with the fatigue (and yes I get nauseated and also get a floaty feeling when I’m fatigued). I exercise when I can, try for a minimum of 5 hours a week, get the occasional massage, and last year I started trying myofascia stretching (similar to what Kitty’s response mentions) and it seems to help (decreased the number of flares)



If you search, or raise discussions on alternative methods you will find that other members have tried everything from acupuncture, reiki, eating natural , various supplements etc and that different things work for different people. It’s definitely worth exploring and researching the different medications , supplements, alternative therapies or combination of them. There’s lots of information on this site, and lots of research being done;so don’t give up , there are things you can try to see if they work for you.



Gentle hugs, B2chi

11

Thank you B2chi. Physical therapy has been helping some and I'll be returning Monday (weather permitting) so we can figure out what's going on with my back. I was taking Lyrica for awhile and it did nothing for my pain. Because of the CMP I have bad inflammation so my doctor started me on Mobic. Unfortunately I had an allergic reaction. So, right now I'm not taking any medication.

My physical therapist gave me a list of supplements that might help. I just started taking Flax Seed Oil so it's too early to see any results from that. Being a vegetarian has helped to give me some energy and cutting out the gluten (the best I can) has helped some with the fatigue. But every now and then I get a real bad wave.

12

Thank you Lovett.