Recently Diagnosed
 

Hi,

I am new to this forum and have recently been diagnosed with Fibromyalgia.

The pain began about 2 or 3 years ago and has progressively gotten worse.
It started with localized pain in my legs, specifically my calves. I would feel pain, pressure and heaviness along with twitching and feeling like there were bubbles in my legs. The pain was localized to my legs until about a year ago when it spread throughout my entire body.

About once a month I would have such horrible all-over aching and stiffness that I felt as though I must be sick with a high fever but I never had one. The aching would be horrible for 3-4 days and then dissipate back down to a dull ache all over but centrally in my legs. I feel like the more time I spend at rest, the worse the pain is. For example, I can only sit on the couch and watch TV for about 2 hours before I ache so much that I need to get up to move and stretch. After doing this I do begin to feel slightly better but it takes a LONG time.

Since then the all over aching and stiffness has become more frequent and my legs ache horribly almost every day, especially at night after working all day.

Another issue that I have which may or may not be related to this is the fact that I have a lot of trouble regulating my temperature. I am always either burning hot and sweating or cold and shivering. I have hot flashes almost every day. Very rarely am I at a comfortable temperature. Most days I wear around 3 or 4 layers of clothing so I can be ready for the temperature fluctuations.

Some other things I deal with on a regular basis are trouble sleeping, always feeling tired/fatigue, morning stiffness, and IBS.

After seeing a rheumatologist a couple of months ago I was diagnosed with Fibromyalgia and Restless Leg Syndrome. Upon looking back at my medical history I remembered that I had undergone extensive tests (including a bone scan) when I was around 8 years old due to the fact that I was complaining of aches and pains in my legs. I was seen by several doctors and was examined at two different hospitals and to my knowledge no diagnosis was ever made. I wonder now if that has something to do with my current issues.

Thanks for taking the time to read my super long post. I'm just wondering if anyone else has had similar experiences.

I also have fibro and rls. The rls went undiagnosed for thirty years. Yep, thirty years. I trust you are now on a protocol that works. When I reached the point that I had an episode every evening, I was miserable. Best wishes.

Spine

Hi,

Thanks for you reply. I'm sorry that your RLS went undiagnosed for that many years, that must have been awful! Hopefully you have a treatment plan that works well for you.

As for me, its not that easy. After being put through the ringer with several different types of medication over the years, I'm at the point where I'm pretty much afraid to take anything else for fear of more horrible side effects. That being said, even if I were to find something that helped such as a muscle relaxer, I wouldn't be able to take it during the day as my job requires me to be physically active and be functioning at 100% at all times.

My next step is to contact a chiropractor and see if I can get an appointment for therapeutic massage. Hopefully if my rheumatologist prescribes it then insurance will cover it. That would be great since its been almost a week of consistent pain, especially at night and I don't wanna take Advil everyday because I know that's not great for you and it really doesn't help that much.

Guess we'll see what happens...


One more question: Sometimes I wake up in the middle of the night and my legs are so stiff that I can't move them. I actually have to move my legs with my hands to kind of "wake them up" and get them to move again.

Does anyone else go through this?

I too have Fibro along with CFS, RLS, CFS and oteo-arthritis. The RLS is one of the worst things, sometimes I'll go 10-14 days without a quality sleep - haven't really found a treatment which works for me, but massage is probably the best.

Good luck.