Fibromyalgia Thread

[toocherie]

Originally Posted by Boo Bear

I never take those teeny tiny muscles for granted. Why is it that the smallest ones that feel like they're THIS BIG?!

I don't know--you think it's going to be some big two inch across muscle and it turns out to be the weeniest thing. sometimes my massage therapist has trouble finding them--but when she does--YOWZA!

Originally Posted by Boo Bear

I hope everybody is hanging in there and that Cheryl's shoulder and face are doing better Right now my feet are tingling and asleep from the Topomax and it is absolutely killing the stress fracture problem areas, especially in my right foot. Ouch!

The pain from the fall has subsided--thanks. Unfortunately, it looks like I really did a number on my front tooth when I fell--saw a specialist dentist yesterday and have to go back in two weeks and see if I need a root canal!

[Boo Bear]

I just went and had cranial sacral therapy and it changed me. I finally feel like there is hope!

[ireland_nicole]

Hi- I haven't officially introduced myself on this thread; I'm Nicole, I'm 35, and I've had fibromyalgia for 9 years, since just after my DD was born. I've tried different meds, not had full relief of course with any... as far as symptoms, have the typical pain that gets way worse w/ weather changes, particularly bad in my ankles, hips and wrists/hands but in bad weather, just feel like I got hit by a truck. The Rheumy says he knows there's something else autoimmune going on, too but can't figure out what it is. My labs are always all over the map, but nothing consistently off, I get a lot of low grade fevers, a lot of numbness in my hands, feet and sometimes face, and am having increasing swelling in my hands and a lot more muscle cramps where the muscles just kind of seize up. Moved to TX 3 years ago, and that has helped quite a bit, haven't had a bad flare (flat on my back 3 -7 days unable to even turn w/o agony) since I started 3xweek chiropractor about 6 months ago; also get massage 1-2 x month (like the rest of you, it hurts so bad, but helps keep the muscles supple.) I am really sensitive to drug side effects, so at the minute I take two aleve every morning (doesn't help w/ fibro pain, but seems to help some of the muscle spasming and keeps my fingers moving a bit) And I still have a drug called Zydol that I used to take when we lived in Ireland that hasn't expired yet. I only use the big drugs maybe once or twice a month when it gets so bad I can't function. I have two kids with special needs and a husband who travels a lot, so I have to keep going.
Thats about it; sorry to be so long!

[toocherie]

Hi Nicole! I've seen you post on Disabilities before but didn't realize you had fibro (or if I did I had forgotten it!)

We have many of the same symptoms--the muscles seizing up--I have that quite a bit in my hands. I call it "morphing"--because my hand will twist into a weird shape (and it hurts like you know what). I have probably had facial issues for 20+ years--how do yours manifest? I know that 20+ years ago I started feeling like the right side of my face felt "funny"--almost like it was hollow. We've done CT scans and all and can't find anything. It comes and goes. A year or two ago I had a lot of swelling on that side and my doctor could only figure it was a swollen parotid gland--so I got prescribed hot compresses and lemon drops--LOL.

It actually rained this morning here in SoCal--which explained why I was up in pain last night--yep, I'm my own barometer too.

I haven't heard of the medicine you mentioned--Zydol is it? Is it only available in Ireland or is it available here in the U.S.?

And are you originally from Ireland or were you living over there temporarily? It must be quite a switch to be in Texas!

Welcome!

Cheryl

[Boo Bear]

Welcome Nicole! I'm sorry to hear you're having so much trouble too, you sound very strong willed though. I've been getting a lot of low grade fevers too, but my core temp is usually 97.3 instead of 98.6 so a 99.5 degree temp feels like hell to me. Hang in there!

[ireland_nicole]

We lived in Ireland for 5 years, oy, the pain... it's cold and damp most of the time, so not exactly optimum conditions LOL. There were also very few services for our children there, so we had to move back to the states 3 years ago. We chose TX because it was warm, there was a good grad school nearby, DH could get a job, and there was a children's hospital. We like it here, and my fibro is better than it was. As far as my face, yep it's a transient numbness; but I also started getting ocular migraines last year where my vision would suddenly blur (lot's of fun while driving) and of course my hands are numb whenever I grasp anything. But I get by, when necessary on an ECV, I told my DH I'm not the energizer bunny he married, but at least I'm still a Timex- I take a licking but keep on ticking!

[toocherie]

Originally Posted by ireland_nicole

But I get by, when necessary on an ECV, I told my DH I'm not the energizer bunny he married, but at least I'm still a Timex- I take a licking but keep on ticking!

LOL--that's the spirit! I think too often people take the way out that "I hurt, therefore I'm disabled, so I'm not going to contribute to society--I'll just sit at home and nurse my wounds"--I hurt all the time --but I still go to work everyday, see friends and family a lot and help with charitable causes. And of course go to Disneyland! LOL

I even did most of that before I had my double knee replacement surgery (arthritis issues)--talk about pain . . . . but I still went to work everyday but cut out the "extras"--i.e., didn't push my energy level so didn't go to shopping malls, didn't go to Disneyland, didn't go anywhere that took a lot of walking etc. How could I justify doing "fun" stuff at all if I didn't do the normal life sustaining things like have a job or maintained my family? It's like someone who is on disability for a bad back and yet goes out and hoes their yard or moves furniture--KWIM? You have to pick and choose what limited energy you can expend.

Now after the knee replacements I can walk pretty far, but because of the fibro and arthritis other places (my feet are morphing as we speak) still have some limits I have to self-impose. (LOL--my podiatrist can't believe I walk as much as I do!)

I also use an ECV sometimes--usually when on a multiple day trip--if I'm just going for one day I usually try to get by without it (unless I'm having a bad flare).

I imagine two special needs kids take a lot of time and energy--kudos to you for keeping going despite your fibro. And to Bridgette for getting her degree and going on to her graduate program. Go girls go!

[toocherie]

Originally Posted by ireland_nicole

We lived in Ireland for 5 years, oy, the pain... it's cold and damp most of the time, so not exactly optimum conditions LOL. There were also very few services for our children there, so we had to move back to the states 3 years ago. We chose TX because it was warm, there was a good grad school nearby, DH could get a job, and there was a children's hospital. We like it here, and my fibro is better than it was. As far as my face, yep it's a transient numbness; but I also started getting ocular migraines last year where my vision would suddenly blur (lot's of fun while driving) and of course my hands are numb whenever I grasp anything. But I get by, when necessary on an ECV, I told my DH I'm not the energizer bunny he married, but at least I'm still a Timex- I take a licking but keep on ticking!

I noticed that you are going to WDW in August--have you been there that time of year before? Does the humidity make your fibro worse?

[ireland_nicole]

Actually, we go in early September (I know this year is moving fast) and the heat and humidity are exactly like here; I figure I'd rather be in pain at WDW than at home LOL. Plus, I do use the ECV when there, whether I hurt or not at that minute, because I know if I take a full day without it I won't be able to walk at all the next. I tend to use it to get to each major area and then walk around that bit, then move on... and sometimes DH will drive it for a little while so I can stretch my legs while pushing the stroller... now that I think about it, I'm sure there are people who might see us and thinking we're "faking it" but oh well...

I have to say, it's great to be around a group of people who are open about their challenges, but refusing to just lie down and accept defeat. Too often in my life I meet people at one extreme or the other, and it's hard to deal with that kwim? So, thanks! for starting and continuing this thread, especially for gals that are optomistic realists!

[toocherie]

Originally Posted by ireland_nicole

Actually, we go in early September (I know this year is moving fast) and the heat and humidity are exactly like here; I figure I'd rather be in pain at WDW than at home LOL. Plus, I do use the ECV when there, whether I hurt or not at that minute, because I know if I take a full day without it I won't be able to walk at all the next. I tend to use it to get to each major area and then walk around that bit, then move on... and sometimes DH will drive it for a little while so I can stretch my legs while pushing the stroller... now that I think about it, I'm sure there are people who might see us and thinking we're "faking it" but oh well...

I have to say, it's great to be around a group of people who are open about their challenges, but refusing to just lie down and accept defeat. Too often in my life I meet people at one extreme or the other, and it's hard to deal with that kwim? So, thanks! for starting and continuing this thread, especially for gals that are optomistic realists!

Yep--that's me. Don't let it get you down but also deal with the challenges. And I do the same thing with the ECV--because experience has shown if I walk about the park all day I won't be able to move much the next day either-- and have been concerned that people think I'm faking--because I will drive to each major area and then walk around. I'm sure they're thinking--look at that fat lady on that scooter--she's too fat to walk around Disneyland. I am just WAITING for someone to actually say something to my face--I figure it's just a matter of time--and then I will pull up my capri leg and show then my surgery scars--LOL!! I am actually looking forward to our warm SoCal weather--little humidity--so I just feel better with the warmth and all--I sometimes use an electric blanket even in the summer just to keep myself warm.

(Of course, can't use it now that the new puppy chewed through the cord--oh yeah, need to get that fixed . . . . )

Glad you found us Nicole--wish you were local because Bridgette is moving out here and we're going to be celebrating her birthday at DL in July!

[Boo Bear]

Originally Posted by toocherie

Glad you found us Nicole--wish you were local because Bridgette is moving out here and we're going to be celebrating her birthday at DL in July!

Agreed! I can't wait to hang out with everybody! (I wish I had 2 of me each day until I move though... packing is a nightmare)

[toocherie]

Hi everyone~! I hope you are all doing well. The past two days have been cool and cloudy here so I've had a bit of trouble with my hands and feet but otherwise ok.

I found that quote in the siggie of one of the gals on my Vegas trip thread. It says:

"Run if you can, walk if you must, crawl if you have to but don't give up." - Dean Karnaze

I think this is a great theme for us!

[goofy4mykids]

Had a doctor apt this week Neuro... my MRI looks good! yea me!!! I have the clearance to start the gym and get this I can fly !!! I think I was crying I told the doc that I feel like Peter pan!! LOL!! I have been grounded for years.. feels sooooo good not to be in that red zone any more!!!


I know What I will celebrate!!!!

[Boo Bear]

Originally Posted by toocherie

Hi everyone~! I hope you are all doing well. The past two days have been cool and cloudy here so I've had a bit of trouble with my hands and feet but otherwise ok.

I found that quote in the siggie of one of the gals on my Vegas trip thread. It says:

"Run if you can, walk if you must, crawl if you have to but don't give up." - Dean Karnaze

I think this is a great theme for us!

I hope the weather gets better so you can get to feeling better!

What a great quote!

Originally Posted by goofy4mykids

Had a doctor apt this week Neuro... my MRI looks good! yea me!!! I have the clearance to start the gym and get this I can fly !!! I think I was crying I told the doc that I feel like Peter pan!! LOL!! I have been grounded for years.. feels sooooo good not to be in that red zone any more!!!


I know What I will celebrate!!!!

That is great news! Way to go!



I had my 2nd cranial sacral therapy session last night and it went well. I'm in pain still, but it's much much MUCH better. There's hope for me!

[Brightsy]

Hi!
Thought I'd come say hello and all.
I just got told today that I have fibro.
The rheumatology doc sat down with me and went over all my blood tests (all basically normal or close to where they should be) and did a physical exam. He said fibro fits my symptoms and my history. He said a lot of the little things I'd had going offkilter over the years that they couldn't figure out were most likely because of the fibro. (mysterious infections, odd aches and pains that seemed to have no real source, the headaches, the fatigue, etc...)
So... I dunno how I feel about it all yet.
My BFF said after I told her (she was dx'd some 7 years ago) "Stop copying me!" LOL