Fibromyalgia

highwaywomen · #1 10-21-2007, 07:29 AM

Hey guys,

Hope I'm not getting too personal, but I'm becoming desperate. I have Fibromyalgia and I have been having a flare up the last few weeks. I've had FMS for 8 years (I'm 28) and this is one of my worst flare ups. Everything I normally do (Chiropractor, Reflexology, stretching, diet, heat) is not working. I find that sleep plays a major rule in how I feel the next day. I have been having a lot of trouble with it lately. I only take Flexeril at night and nothing during the day. I seem to be very sensitive to meds and have taken everything under the sun and nothing works, or the side effects are really bad. I refuse to take narcotics, I am usually able to deal with the pain. Sleep and distraction are sometimes key, but both have been failing me lately. Anyways, I am a full time student right now. I am not working, thanks to a family member that is letting me live with them. Anyways, I have been really stressed at school and I think that is keeping me up at night. So the doctor gave me a sleeping pill, Lunesta, and it does work. I hate hate hate taking meds and I've tried stopping it twice now (it doesn't have to build up in your system) and I am usually up all night. Yesterday was a bad day. I didn't take it Friday night, and as usual, I didn't sleep, and had to function yesterday because I promised a little girl I would be at her birthday party. My pain is all concentrated in my neck, shoulders, and chest, although from there it spreads but that is the worst spot. It felt like I had 100lb weights on each shoulder yesterday. I also have muscle spasms all the time, which are worse at night because I'm relaxing. The last 4 days my right eye lid has been twitching every minute or two and it's driving me NUTS!! I have been to my regular doctor and she pretty much told me she didn't want to see me (this was last week when I was confined to bed (for the first time since I've had FM!) because of severe pain) and told me to call my rheumotologist. I got in to her the next day and she told me to continue with the Lunesta and to call back if there were no improvements. She said "Jackie, you're doing everything right!" I thought - "No, I'm not...because why am I in so much pain?". It's a nice feeling when the doctors don't even know what to do for you! Anyways, I feel like I'm rambling to a bunch of strangers, but if there is even one person out there that knows what I'm talking about and has any hints that would be great! I do feel better today because I took Lunesta last night. I plan on laying around today, doing homework, and hopefully relaxing.

Jackie

By the way...I think because of FMS this is why I'm so connected to Stevie. I wrote her a letter (and gave it to her during 'The Edge' walk) and told her that she is my Rhiannon. She sings away pain and brings hope.

**mylittledemon** · #2 10-21-2007, 08:05 AM

Quote:

Originally Posted by highwaywomen

Hey guys,

Hope I'm not getting too personal, but I'm becoming desperate. I have Fibromyalgia and I have been having a flare up the last few weeks. I've had FMS for 8 years (I'm 28) and this is one of my worst flare ups. Everything I normally do (Chiropractor, Reflexology, stretching, diet, heat) is not working. I find that sleep plays a major rule in how I feel the next day. I have been having a lot of trouble with it lately. I only take Flexeril at night and nothing during the day. I seem to be very sensitive to meds and have taken everything under the sun and nothing works, or the side effects are really bad. I refuse to take narcotics, I am usually able to deal with the pain. Sleep and distraction are sometimes key, but both have been failing me lately. Anyways, I am a full time student right now. I am not working, thanks to a family member that is letting me live with them. Anyways, I have been really stressed at school and I think that is keeping me up at night. So the doctor gave me a sleeping pill, Lunesta, and it does work. I hate hate hate taking meds and I've tried stopping it twice now (it doesn't have to build up in your system) and I am usually up all night. Yesterday was a bad day. I didn't take it Friday night, and as usual, I didn't sleep, and had to function yesterday because I promised a little girl I would be at her birthday party. My pain is all concentrated in my neck, shoulders, and chest, although from there it spreads but that is the worst spot. It felt like I had 100lb weights on each shoulder yesterday. I also have muscle spasms all the time, which are worse at night because I'm relaxing. The last 4 days my right eye lid has been twitching every minute or two and it's driving me NUTS!! I have been to my regular doctor and she pretty much told me she didn't want to see me (this was last week when I was confined to bed (for the first time since I've had FM!) because of severe pain) and told me to call my rheumotologist. I got in to her the next day and she told me to continue with the Lunesta and to call back if there were no improvements. She said "Jackie, you're doing everything right!" I thought - "No, I'm not...because why am I in so much pain?". It's a nice feeling when the doctors don't even know what to do for you! Anyways, I feel like I'm rambling to a bunch of strangers, but if there is even one person out there that knows what I'm talking about and has any hints that would be great! I do feel better today because I took Lunesta last night. I plan on laying around today, doing homework, and hopefully relaxing.

Jackie

By the way...I think because of FMS this is why I'm so connected to Stevie. I wrote her a letter (and gave it to her during 'The Edge' walk) and told her that she is my Rhiannon. She sings away pain and brings hope.

My good friend Deano has the same problem. Its funny cause I was talking to him about it last week. He said he had to change his diet quite a bit...and he works out, so that he's exhausted, and can sleep better. But, he also takes sleeping pills 3-4x per week. Then as we finished our lunch...he said "sex and masturbation help too." I then proceeded to spit out my coke and pizza.

SuzeQuze · #3 10-21-2007, 08:54 AM

Take the meds for sleeping. You don't have to be a martyr, just take them. Also consider cutting back your school schedule. Reducing your stress will help.

jannieC · #4 10-21-2007, 09:59 AM

One of my closest friends has Fibromyalgia, too. We're getting ready to start a water aerobics class at school together- I'll let you know how that works out for her.

highwaywomen · #5 10-21-2007, 11:08 AM

Quote:

Originally Posted by SuzeQuze

Take the meds for sleeping. You don't have to be a martyr, just take them. Also consider cutting back your school schedule. Reducing your stress will help.

Yes! I have definitely decided to reduce my schedule. I am taking 15 credits right now and I plan on going back to 12 next semester. I was doing so well over the summer, I thought I could handle the extra credit hours. My body is most certainly trying to tell me something. I plan on calling the doctor to see if I can get more samples of Lunesta. I guess I will suck it up for now and take it until I learn to reduce stress intake.

It's nice to know that people know what FMS is. I do not know anyone around me that has it, or for that matter has even heard of it until I explain. It gets kind of lonely sometimes, but then I listen to Stevie

Thanks for the reply!

Jackie

estranged4life · #6 10-22-2007, 06:08 PM

Sending you my positive thoughts...

I can relate to medical problems, my current health situation has worsen a tad bit.

The Catdancer · #7 10-22-2007, 06:31 PM

Keeping you in my thoughts.

The Catdancer · #8 10-22-2007, 06:32 PM

Quote:

Originally Posted by estranged4life

Sending you my positive thoughts...

I can relate to medical problems, my current health situation has worsen a tad bit.

What happened?

sasja · #9 10-22-2007, 06:45 PM

IVIg, if you have the insurance that'll approve it.

My deep symphathies Jackie ~hug~

estranged4life · #10 10-22-2007, 06:57 PM

Quote:

Originally Posted by The Catdancer

What happened?

right temporal lobe is expanding, thus causing me more pain than before (I have had a migraine type headache for 3 hours now, not even hydrocodone is helping to ease the pain). It is now affecting my vision, sometimes I have blurred double vision and very bad mood swings (The tumor is located in an area that can affect my mental health - which explains why my temper has started to come back) along with other annoying side-affects (Numbness)

Been referred to have another MRI performed to see how much more damage my brain has suffered

sasja · #11 10-22-2007, 07:07 PM

Oh Brian. I am so sorry you are suffering that. Sending good thoughts for your MRI.
So sorry.

SuzeQuze · #12 10-23-2007, 07:12 AM

Quote:

Originally Posted by highwaywomen

Yes! I have definitely decided to reduce my schedule. I am taking 15 credits right now and I plan on going back to 12 next semester. I was doing so well over the summer, I thought I could handle the extra credit hours. My body is most certainly trying to tell me something. I plan on calling the doctor to see if I can get more samples of Lunesta. I guess I will suck it up for now and take it until I learn to reduce stress intake.

It's nice to know that people know what FMS is. I do not know anyone around me that has it, or for that matter has even heard of it until I explain. It gets kind of lonely sometimes, but then I listen to Stevie

Thanks for the reply!

Jackie

That's great. I have to manage my stress levels because of back problems and TMJ but I can only imagine dealing with something more serious. Take care of yourself!

JazmenFlowers · #13 10-23-2007, 08:30 AM

so sorry to hear this. I don't really know much about this (I must do some research), but I'll keep you in my thoughts.

HejiraNYC · #14 10-23-2007, 11:16 AM

Have you tried one of the two treatments currently approved by the FDA for fibromyalgia- Lyrica (neuropathic pain med) and Cymbalta (antidepressant)? Since fibromyalgia is a diagnosis of exclusion, i.e., nobody knows what the hell is wrong with you, I would imagine you must have tried just about everything imagineable...

Wishing you and Brian the best!

sasja · #15 10-23-2007, 06:36 PM

I am taking a high dose of cymbalta for my neuropathy right now and it is helping, that in combination with Neurontin and the IVIg..... Discuss the IVIg for sure as it's very indicated in Auto-immune treatment!