Fibromyalgia Thread

[Boo Bear]

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]

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!

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

 

[ireland_nicole]

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!

Wow, I love this qoute!!

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!!!!

Congrats! That is awesome!!

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

Well, at least now you're a member of a very exclusive club;

 

[goofy4mykids]

I am leaving 2morrow for a long awaited trip .... and I am in sooo much PAIN!!! I havent slept for the past two nights... I ve been cleaning and ding laundy and my hands and toes lock up?! It is so painful and I have to pysically make them straight. I am so upset with myself cause I think I may have over di it the past few weeks... (Ive been helping church, VBS etc...) I am due for my period UGH!!! I am just a wreck!!

 

[Brightsy]

I don't have any thing but kind words and hug...

 

[ireland_nicole]

I am leaving 2morrow for a long awaited trip .... and I am in sooo much PAIN!!! I havent slept for the past two nights... I ve been cleaning and ding laundy and my hands and toes lock up?! It is so painful and I have to pysically make them straight. I am so upset with myself cause I think I may have over di it the past few weeks... (Ive been helping church, VBS etc...) I am due for my period UGH!!! I am just a wreck!!

well, you did what we all tend to do, which is try to keep going no matter what. can you rest today at all? Definitely rent an ECV, from an offsite vendor if possible so you have it accessible all the time. You may have to take it easy and medicate, but you'll still be on vacation- YEAH! Sending prayers and
Nicole

 

[brighteyes]

I know this is not a practical solution for most people but a best friend and business partner actually moved to Florida (west coast island) and it made all the difference in his quality of life.

bookwormde

YAY!! Now I have an excuse to move to Florida!! LOL Just kidding.

I am living here in Canada, and am far worse in the winter and when it rains. Although this summer I seem to be progressively getting worse. I am 40, and have had fibro for at least 3 years now and diagnosed about a year ago.

Last year I started taking Evalil as well as Lyrica for the pain and sleep issues. Without the Evalil I wake up every hour. I recently thought it was not working anymore as I seem to very exhausted ALL the time. Well I went off it for a week to see and I had the worst pain of my life. All over achiness, and extrememe pain in my arms, wrists, shoulders, so bad I cried myself to sleep many nights. Needless to say I went back on it.

My symptoms are extreme fatigue, pain in joints, muscle pain, and sharp shooting pains in my legs, chest, and ribcage. I also have extreme pain in my calf muscles that prevent me from walking at times. That is the worst. I once had to spend two days off work after going for a 10 min walk because my calf muscles tightened up so bad I could not walk.

When in a really bad flare, I just lay down, try not to move a muscle, and apply as much heat as I can for as long as I can. Usually within a day or two the pain lessenes to a degree where I can somewhat continue with my life.

I have learned that now if I work for 3 hours or 6 or do an errand and it tires me out, I come home and take a nap. If others think that I sleep too much, well so be it, it is what I need to function. I do not make apologies anymore. My DS13 knows I need to take care of me, and lets me nap.

Steph

 

[brighteyes]

I am leaving 2morrow for a long awaited trip .... and I am in sooo much PAIN!!! I havent slept for the past two nights... I ve been cleaning and ding laundy and my hands and toes lock up?! It is so painful and I have to pysically make them straight. I am so upset with myself cause I think I may have over di it the past few weeks... (Ive been helping church, VBS etc...) I am due for my period UGH!!! I am just a wreck!!

Hi there. I know how you feel, I tend to overdo things as well, especially before a trip. I have had to take a day or two to rest in my room while at Disney, but at least I was at Disney. What I have done that helps me, is to just hang out at my resort room, take a swim in the pool, the water helps while loosening up those muscles in a gentle way. Get a good night's sleep, and hopefully you will feel better in the morning. I am cheering for you.

Stephanie

 

[IvyandLace]

Hello, all! I was diagnosed with Fibro in 2005 after being on long-term disability from my Labor and Delivery nursing position d/t back issues. I have had multiple medication changes since my diagnosis but have been blessed to find a wonderful Rheumatologist who was the one to diagnose me. (I live in North Carolina.) I now take an anti-inflammatory for OA in my knee, Tramadol for pain three times/day, Tizanidine (Zanaflex) for muscle spasms three times/day, Lyrica three times/day, Cyclobenzaprine (Flexeril) for muscle spasms at night along with Trazodone to help me sleep more soundly. I have some severe sleep issues that are still going on but the Trazodone and Cyclobenzaprine definitely help. To be honest, once I was started on the Zanaflex and Cyclobenzaprine, I started to feel more "human" and was able to start working full-time again. The muscle relaxers made that much difference.

I get joint pain, fatigue, some "fibro fog" which varies from day-to-day, and muscle spasms with my Fibromyalgia. In 2007 I developed constant right shoulder/rib pain that was severe enough to place me on long-term disability again. Since that time, I have found that getting a 90-minute deep tissue massage at least two times/month helps tremendously. It is very expensive though so I don't always make it.

I now work at home which is such a blessing as my shoulder pain was aggravated by the physicality of my other nursing positions. However, I am very nervous about my job at this time, mainly because I have been out on medical leave ever since I pulled a muscle on the side of my neck approximately 6 weeks ago which caused me to have severe headaches. It has since faded but my fibro then acted up and I now have a virus which has knocked me down again. I have a *really* good job with EXCELLENT benefits so I must keep it.

I am married to a wonderfully supportive man who has been married to me for almost 12 years. We do not have children but are discussing the option. I must first get my weight under control and am seriously considering having weight loss surgery. What I'd like to ask each of you is this (and please feel free not to answer if you don't want to)-Have any of you chosen not to have children based on Fibro? If you do have children, would you have done anything different if you knew then what you know now?

Thanks...I'm excited to find a group on the DIS that knows exactly what I am going through.

IVY

 

[brighteyes]

I would have still had my child knowing what I know now. Although sometimes I feel that I am not as bad as some other fibromites, but that is all up for interpretation isn't it?

I have been a single mom from the beginning, and would still have my child knowing that I would develop fibro. It is a struggle to get everything done, and most of the time, I don't get everything done...but I have learned to accept that. I hope that helps.

I usually think my teenage son doesn't get it or doesn't care, he's not too helpful around the house and does not seem to have an understanding when I am in a deep flare, however, when we went to Disney last Christmas, I had difficulty walking due to my calf muscles seizing and severe pain in my arches even though I had orthodics on. Well who was my helper, taking me by the hand and leading me through the crowds, and letting me lean on him when I was limping. He also did not complain when I couldn't walk anymore and went back to our room early. I love him for that!! That to me was worth it's weight in gold!

Stephanie

 

[tiggspring]

Wow I'm so glad I found this thread. I have had Fibro and a host of other diagnosis for 15 years now. Have to make dinner now but I'll try to get back soon. Sending pain free vibes to all !!!

 

[toocherie]

Welcome and so glad you posted! I have been having a busy summer and was just thinking I needed to check in with everyone.

I have been seeing a homeopathic doctor and taking some natural medicines--the jury is still out--my hope is to be able to reduce the prescription drugs I take and have more energy--and it does seem like my energy has increased. So, time will tell.

 

[ireland_nicole]

Hello, all! * I was diagnosed with Fibro in 2005 after being on long-term disability from my Labor and Delivery nursing position d/t back issues.* I have had multiple medication changes since my diagnosis but have been blessed to find a wonderful Rheumatologist who was the one to diagnose me.* (I live in North Carolina.)* I now take an anti-inflammatory for OA in my knee, Tramadol for pain three times/day, Tizanidine (Zanaflex) for muscle spasms three times/day, Lyrica three times/day, Cyclobenzaprine (Flexeril) for muscle spasms at night along with Trazodone to help me sleep more soundly.* I have some severe sleep issues that are still going on but the Trazodone and Cyclobenzaprine definitely help.* To be honest, once I was started on the Zanaflex and Cyclobenzaprine, I started to feel more "human" and was able to start working full-time again.* The muscle relaxers made that much difference.* I get joint pain, fatigue, some "fibro fog" which varies from day-to-day, and muscle spasms with my Fibromyalgia.* In 2007 I developed constant right shoulder/rib pain that was severe enough to place me on long-term disability again.* Since that time, I have found that getting a 90-minute deep tissue massage at least two times/month helps tremendously.* It is very expensive though so I don't always make it.I now work at home which is such a blessing as my shoulder pain was aggravated by the physicality of my other nursing positions.* However, I am very nervous about my job at this time, mainly because I have been out on medical leave ever since I pulled a muscle on the side of my neck approximately 6 weeks ago which caused me to have severe headaches.* It has since faded but my fibro then acted up and I now have a virus which has knocked me down again.* I have a *really* good job with EXCELLENT benefits so I must keep it.* I am married to a wonderfully supportive man who has been married to me for almost 12 years.* We do not have children but are discussing the option.* I must first get my weight under control and am seriously considering having weight loss surgery.* What I'd like to ask each of you is this (and please feel free not to answer if you don't want to)-Have any of you chosen not to have children based on Fibro?* If you do have children, would you have done anything different if you knew then what you know now?* Thanks...I'm excited to find a group on the DIS that knows exactly what I am going through.* IVY

Hi! I have two kids and developed fibro between them. I didn't know at the time that both were going to have significant special needs. So that factors into my thinking. On the one hand, I had no idea to what depths of exhaustion I would sink and my kids require constant supervision and attention, there are days that I'm in agony and exhausted but taking a nap is not an option. On those days, I do wish a bit that there was a return policy to be completely honest. On the other hand, they are so amazing, and I can't imagine them not being in the world. I think one thing I definitely would have done is space them out more. and I would have bought a one story house b/c the stairs are soooooooo hard.

I'm in the process of having to go back to work for financial reasons, and I'm not sure how that's going to play out. I'm thiking I'll probably go back into home care nursing, because then at least there's not as much heavy lifting.

Welcome and so glad you posted!* I have been having a busy summer and was just thinking I needed to check in with everyone.I have been seeing a homeopathic doctor and taking some natural medicines--the jury is still out--my hope is to be able to reduce the prescription drugs I take and have more energy--and it does seem like my energy has increased.* So, time will tell.

So glad you're feeling a bit better; keep us posted!

 

[breyecutie]

Hello Everyone! I was diagnosed at 19 with Fibromyalgia. My senior year when I was 18 it was very painful. I was sick and hurt so bad. I went to many doctors and they would tell my mom and I that I was crazy. I had senior release and I would come home and be so tired and have to take naps. Then I found a doctor to listen to my problems and told me that I had it. They gave me antidepressant and some muscle relaxers. Now at 29 the muscle relaxers do not work. My pain now is very more intense since I have gotten older. There are some days that I can not move and my skin hurts to touch. Now in Dec. 08 I was diagnosed with Type 1 diabetes. I take 4 shots a day. I am so thankful that I have a very good supportive family that I have because there are sometimes I do not know what to do with everything going on.








My first disney trip will in October!!!!

 

[brighteyes]

Hi! I have two kids and developed fibro between them. I didn't know at the time that both were going to have significant special needs. So that factors into my thinking. On the one hand, I had no idea to what depths of exhaustion I would sink and my kids require constant supervision and attention, there are days that I'm in agony and exhausted but taking a nap is not an option. On those days, I do wish a bit that there was a return policy to be completely honest. On the other hand, they are so amazing, and I can't imagine them not being in the world. I think one thing I definitely would have done is space them out more. and I would have bought a one story house b/c the stairs are soooooooo hard.

I'm in the process of having to go back to work for financial reasons, and I'm not sure how that's going to play out. I'm thiking I'll probably go back into home care nursing, because then at least there's not as much heavy lifting.


Wow Ireland, I can only imagine! I know the exhaustion I feel and I only have a pretty self sufficient 13 y/o. And both having high needs is a kicker especially if you are already exhausted.

I hear you on the stairs, I have enough trouble getting up and down my stairs gracefully on my own.

I have found this is definately a progressive illness. My pain is a lot worse than previous years, and I found this summer to be especially exhausting (even though I hardly worked). I have one more year of college to go ( I went back again - to try to get a better job) and I am finding I am dreading it because the last 2 yrs have been tough. I have pretty much slept my whole summer away.

I feel like that is my theme - any spare minute I have I sleep. I don't even have the energy to make dinner after I come home from work. I have to rest for 3 or 4 hours to get the energy to make a quick dinner. Is this common with you all as well?

 

[toocherie]

Well I'm not Ireland Nicole, but yes exhaustion is a hallmark of the disease. I am also recently not feeling great. However, at the suggestion of a homeopathic doctor I stopped eating grains and dairy for a couple of weeks and felt much better! Then I "fell off the wagon"--big mistake. the past couple of days have been awful! I'm back on the eating program again and hoping I'll get some zip back soon.

 

[tiggspring]

Hi everyone. I finially made it back. This last week has been one of those weeks that I just couldn't think so waited to post. My name is Bonnie and I have had Fibro for 15 years. My official diagnosis in FMS, CFIDS, Chronic Toxoplasmosis and complicated migraines but I have a lot of bizarre symptoms and my disease acts a lot like MS with good and bad days and symptoms taking turns as to which will be worse day to day or month to month.

I was diagnosed six months after my marriage to DH and two years after an injury at work. I was a milue therapist at a children's psychiatric hospital and was attacked by a kid. That was not unusual but we were short handed and it took 20 minutes before I got assistance in a restraint and I hurt my right shoulder quite bad. Next day had my first migraine, six months later my Fiancee (DH) noticed I would have trouble speaking and I would crash after eating out. 9 month later I stopped working my second job and switched my primary job from nights to days. By the time I was diagnosed I was doing home therapy and had crammed my week into t-thur so I would only work a few hours at the ends of the week so I could sleep in four days. Almost two years to the day of the incident I was diagnosed and put out of work by my Dr because I could not remember basic things like how to fill out my time sheet and how I drove to places . For the next 2 years I saw 10+ doctors and tired 20+ med's and got to the point of crawling to get from room to room when alone and sleeping 16-20 hrs a day. Once I put an end of my guinny pig days things improved.

I now take a lot of supplements use visualization ,do relaxation techniques and more recently I use custom aroma therapy. I'm on vicoden, ativan , flexeril, excedrin migraine all prn because if I use anything too long I get adjusted and then it is hell to get off of it. It took me a year to get off ativan. I only went back after a severe episode and found I could take it occasionally and not get dependant again. I was very athletic but now exersize is out. Doing anything consitantly put me right back to bed. But on good days I do try to take walks and do fun things with the kids. Gotta grab life when you can.

I'm really looking forward to having place to share treatment ideas, give a support to newbies to the disease and a place to grumble on those days that are not so good. Sending pixi dust and no pain vibes your way!