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Lizardwoman85
02-17-2009, 09:47 PM
Hi everyone,

First, I must be in the early stages of Fibro? Because I read it is not progressive.....but I swear the last few months I've been getting worse and worse and am quickly losing more abilities to do things I used to be able to do. I am just finding I am having more pain, more frequently.

I mean before I would wake up maybe once a night, change my position and would be fine the rest of the night. Now I am waking up constantly and just feel like every part of my body that touches the bed is excrutiating. I also am noticing more moments where the pain hits like in a wave and a few times has knocked me off my feet leaving me grabbing for nearby objects. It is strange and rather frustrating since I haven't noticed a trigger yet.

I also was wondering does anyone else ever get these weird "twinges" where like it is just a small spot that feels like someone is shoving a hot knife into my body. It is such a sharp pain it takes my breath away and is very random and I get them all over and different times.

Currently I am on Pristiq, Cyclobenzaprine, Meloxicam, and Darvocet as needed (lately I've been having to take it more often :/). I also take 1000u Vitamin D, a multivitamin, Flaxseed Oil, and some other meds for other health issues.

But anyway, was just wondering about those things and also just need to talk about it a bit.

Thanks again friends,
Liz

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Rita27
02-18-2009, 12:14 AM
Hi Liz, I am at the point where I never have a good day. I used to get to the gym 3 times a week, now I don't go at all. Just too much pain and my back and knees. There's nothing I can do without pain, not even swimming.

I can't sleep without a sleeping pill, I'm too heavy and I'm just so depressed. I have no pain meds, just anti-inflammatories and muscle relaxers. The doctors don't seem to take me seriously.

It is so depressing, I know. I try to go on with everyday things, but you're right, there are more and more things I just cannot do--like walk my dog which I used to love. You're not alone....

shabbychic
02-18-2009, 04:30 PM
hi
i dont know why people say fibro isnt progressive:(
mine has became so much worse and i also have tmj ad i.b.s among other health issues:dizzy:
you can get fare ups of fibro,which can last for days to get over.
hope iv helped a bit...fibro fog playing up haha

julieleaps
02-18-2009, 08:46 PM
Hey Liz:

I'm not sure why anyone thinks this disease is not progressive, either. My husband just said to me last night that he thinks I'm definitely worse than I was 4-5 months ago. (I was working then, but since October, I have not been able to even go to work.)

I too have gained weight, and unable to too much of anything. I hardly go out anymore: I cannot afford to slip and fall on the ice, the cold is just too much to deal with, and I no sooner get someplace and I just want to be home again. I pray that another change of seasons in the spring will help to make me feel better.

As far as the twinges go, I experience the same thing. I clench my teeth so much these days! I read someplace someone describing them as beestings - I think that's fairly accurate. I have described it as feeling like someone is sticking me with a needle. I've joked with my husband that I really need to find that voodoo doll that someone is sticking with needles! It happens randomly, mostly for me in the evenings.

don't know if that's helpful or not...

Lizardwoman85
02-18-2009, 09:15 PM
Hi Liz, I am at the point where I never have a good day. I used to get to the gym 3 times a week, now I don't go at all. Just too much pain and my back and knees. There's nothing I can do without pain, not even swimming.

I can't sleep without a sleeping pill, I'm too heavy and I'm just so depressed. I have no pain meds, just anti-inflammatories and muscle relaxers. The doctors don't seem to take me seriously.

It is so depressing, I know. I try to go on with everyday things, but you're right, there are more and more things I just cannot do--like walk my dog which I used to love. You're not alone....

Hi Rita,

I'm sorry to hear you're struggling so much. I am still trying to get some exercise in (bought a used elliptical), but am finding it just...isn't happening. I try to force through it, but I think it's only making things worse when I push myself so hard. I was just hoping to lose some weight before things get worse, but I don't think I got to it in time :/

I only have the Darvocet from previous conditions. I tried getting something stronger, but my doctor too doesn't seem to think I need them. Although I'm about out of them :/.

Thank you for letting me know I'm not alone. It's nice to be reminded sometimes that there are other people out there who understand exactly what I'm going through.

Thanks for your support,
Liz

Lizardwoman85
02-18-2009, 09:23 PM
Hey Liz:

I'm not sure why anyone thinks this disease is not progressive, either. My husband just said to me last night that he thinks I'm definitely worse than I was 4-5 months ago. (I was working then, but since October, I have not been able to even go to work.)

I too have gained weight, and unable to too much of anything. I hardly go out anymore: I cannot afford to slip and fall on the ice, the cold is just too much to deal with, and I no sooner get someplace and I just want to be home again. I pray that another change of seasons in the spring will help to make me feel better.

As far as the twinges go, I experience the same thing. I clench my teeth so much these days! I read someplace someone describing them as beestings - I think that's fairly accurate. I have described it as feeling like someone is sticking me with a needle. I've joked with my husband that I really need to find that voodoo doll that someone is sticking with needles! It happens randomly, mostly for me in the evenings.

don't know if that's helpful or not...

Well, at least I'm not losing my mind thinking it is getting worse. I was afraid maybe I had something else even on top of this going on!

I hear ya on the cold weather. I've noticed on the cold days most of the time I have to call in to work...I just cannot function when it is really cold. I also am terrified of the ice....it get so tense it just makes the pain worse. I was trying to exercise and lose weight before things got really bad....but I think I started too late. I bought a used elliptical...but could only do a couple minutes on it at first....now it has been over a week since I've been able to do it at all. My coworkers keep trying to get me to go out and hang out with them...but I just never can. I hurt too much :/.

I also am glad to hear I'm not losing my mind on the twinges either. I would say that is exactly what it feels like, like a beesting.

Thanks for your support,
Liz

JacquelineH
02-18-2009, 10:32 PM
Hi, I don't want to go any where. We had a couple of warm days and I felt a little better but it is getting cold again and I can't handle it at all. I use to be fine in cold weather, I worked at a ski hill for 14 years, quiting in 1999. I just want to stay home by the wood stove and watch tv.

I can tell you when the weather is going to change. The pain defiantly gets worse other than summer. I find if it is humid I am real bad.
Hope everyone feels better for tomorrow. Take care, and wishing everyone an early spring.

BelleoftheSouth
02-19-2009, 12:22 PM
:wave:Hi Lizardwoman and all...I stay home all the time...I have my Computer, TV, Telephone and Crossword Puzzles but lately that hasn't been enough to keep me from getting antsy:(

Spring will come and go and I'll maybe sit on my back Deck 2-3 times because I'm sick of neighbors calling each other and saying HEY I GOT A SIGHTING OF BELLE:jester:..

I'm a homebody now..left my job..I miss it, I miss the travel:(

Oh well...I use a sense of humor and I have always looked at the saying

'I cried because I had no shoes until I met a man who had no feet'

this brings me back to whatever normalcy is in my life..

Take care and theres tons of gread advice here/

(((Gentle Hugs for You)))

Belle~

kirstee
02-19-2009, 02:34 PM
It is a progressive syndrome.:dizzy:

Kirstee

chilyrabit
02-19-2009, 02:52 PM
I too am so sorry to hear about yours and the responder's struggles this winter. As I have indicated in other threads I have been officially diagnosed now for about 3 years. I have had symptoms for going on 15+ years now. I don't think I agreed about the progressive part of the disease until I read this thread and then thought back over the last 15 years. I am definitely worse today than I was 15 years ago. I too am limited in what I can and cannot do. I don't like extreme temperature changes either.

I recently took a year off of work to try and get my meds straightened out etc... so that I would be able to function and have at least a "semi-life". I was fortunate that under our contract at work, it entitled me to a year off (w/o pay of course but I had some disability insurance) and I got to keep my health insurance while I was off. I saw alot of different doctors while I was off. Many were not on the fibro bus. Of course, that was the end of them. I did see this one rheum doc that gave me some advice that at the time I just could not fathom. She told me that the absolute worse thing a fibro patient could do is to quit work all together. Of course I was thinking a wide variety of things that I could never repeat on this board. She also wanted to take away all of my pain meds. NOT So, on I went until I found a doc that was on the "bus" and understood that I NEEDED the meds. I actually have a nice group or team of docs that I have found to be very helpful and I think a couple even care!

As it got to be closer to the time that I was going to have to go back to work, I started having panic attacks, pain attacks and any other attack you can imagine. I had been turned down for disability due to my age. I had talked to a lawyer who told me that it would be virtually impossible for me to get disability at my age (regardless of what health problems I was having). My guess is that the whole "syndrome" thing played some part in it. :dizzy:

I had to make myself go to work or I would lose my health insurance. It turned out to be the best thing I could've done. I realize that not everyone is in a position to do that. I realize we are all different.

Yes, I am in pain everyday. Yes, it is a struggle. Sometimes, I just call off because just can't do it. But for me, it has turned out to be a great diversion. As long as I am busy at work, my mind is mostly off of the pain. I still have muscle twitches and I am just waiting for the day that I fall down with jelly legs...that will give the office something to talk about! Fortunately, that hasn't happened so far. I take pain meds at work and because I have been on the narcotics for so long, I can usually do everything with them in my system. Now, most days, I go home and take a nap before trying to do the mom/wife thing.

Please don't take this as a negative to anyone out there. I am simply telling you what I do. Maybe you will be able to take something from what I say, maybe not. I just went through a really rough month. I had to have one of meds changed because it was causing kidney stones and I only have one kidney and so that was getting a little tricky. I missed about 1/2 of the month from work unpaid. Remember, there is FMLA out there for those that do work and have to take time. I have used FMLA every year since it started; it has been my life saver and the job too!!

My point is that if anyone out there that is really having a rough time can divert your attention with something, anything; it might make a difference.

For me, I really don't want fibro to run my life. I have a family that depends on me and Belle, that is a great reality check about the shoes and the feet.
People often ask me here at work how I come in and laugh and smile and that is exactly what I tell them. There is always someone out there that has it worse than I do. If you read all of this, thanks. If you are able to take something with you then I am glad, if not, I will keep you in my thoughts and prayers.

Kim

Lizardwoman85
02-19-2009, 11:08 PM
I too am so sorry to hear about yours and the responder's struggles this winter. As I have indicated in other threads I have been officially diagnosed now for about 3 years. I have had symptoms for going on 15+ years now. I don't think I agreed about the progressive part of the disease until I read this thread and then thought back over the last 15 years. I am definitely worse today than I was 15 years ago. I too am limited in what I can and cannot do. I don't like extreme temperature changes either.

I recently took a year off of work to try and get my meds straightened out etc... so that I would be able to function and have at least a "semi-life". I was fortunate that under our contract at work, it entitled me to a year off (w/o pay of course but I had some disability insurance) and I got to keep my health insurance while I was off. I saw alot of different doctors while I was off. Many were not on the fibro bus. Of course, that was the end of them. I did see this one rheum doc that gave me some advice that at the time I just could not fathom. She told me that the absolute worse thing a fibro patient could do is to quit work all together. Of course I was thinking a wide variety of things that I could never repeat on this board. She also wanted to take away all of my pain meds. NOT So, on I went until I found a doc that was on the "bus" and understood that I NEEDED the meds. I actually have a nice group or team of docs that I have found to be very helpful and I think a couple even care!

As it got to be closer to the time that I was going to have to go back to work, I started having panic attacks, pain attacks and any other attack you can imagine. I had been turned down for disability due to my age. I had talked to a lawyer who told me that it would be virtually impossible for me to get disability at my age (regardless of what health problems I was having). My guess is that the whole "syndrome" thing played some part in it. :dizzy:

I had to make myself go to work or I would lose my health insurance. It turned out to be the best thing I could've done. I realize that not everyone is in a position to do that. I realize we are all different.

Yes, I am in pain everyday. Yes, it is a struggle. Sometimes, I just call off because just can't do it. But for me, it has turned out to be a great diversion. As long as I am busy at work, my mind is mostly off of the pain. I still have muscle twitches and I am just waiting for the day that I fall down with jelly legs...that will give the office something to talk about! Fortunately, that hasn't happened so far. I take pain meds at work and because I have been on the narcotics for so long, I can usually do everything with them in my system. Now, most days, I go home and take a nap before trying to do the mom/wife thing.

Please don't take this as a negative to anyone out there. I am simply telling you what I do. Maybe you will be able to take something from what I say, maybe not. I just went through a really rough month. I had to have one of meds changed because it was causing kidney stones and I only have one kidney and so that was getting a little tricky. I missed about 1/2 of the month from work unpaid. Remember, there is FMLA out there for those that do work and have to take time. I have used FMLA every year since it started; it has been my life saver and the job too!!

My point is that if anyone out there that is really having a rough time can divert your attention with something, anything; it might make a difference.

For me, I really don't want fibro to run my life. I have a family that depends on me and Belle, that is a great reality check about the shoes and the feet.
People often ask me here at work how I come in and laugh and smile and that is exactly what I tell them. There is always someone out there that has it worse than I do. If you read all of this, thanks. If you are able to take something with you then I am glad, if not, I will keep you in my thoughts and prayers.

Kim

Thanks so much for your wonderful post hun. I tried to read all I could, but my brain is a bit foggy at the moment. I think I got most of it though. Ya, I know a lot of doctors are just not into the whole "fibro" thing. I've had so many look at me...tell me I have the symptoms...make the diagnosis...then tell me it doesn't exist and that I am a hypochondriac. It was only recently that I've found a couple doctors who are actually "attempting" to do something for me. I'm hoping the next visit I'll be able to get into an actual pain doctor...hopefully one more familiar with fibro.

I understand what you mean about staying busy and trying to push the pain out of mind. When my pain isn't too bad, keeping busy helps me to get through it. Although I find when I'm not being careful and push myself too hard I just can't function afterwards. Now that I've told my coworkers and boss, things are a little better....but unfortunately my job requires me to be on my feet, and I have yet to get a new job yet. Lack of jobs in this area is severe.

Anyway, thanks again for the friendly advice.

-Liz





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