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08/28/2009 08:25 AM

lost and alone

catwhisperer
 
Posts: 15
Member

Hello everyone, I joined over on the small group and mammy told me about this group. Talk about fibro fog or whatever, it took me about a week to find this group.DUH!!! I've had a few rough days lately, thought I was loosing my mind, been self medicating just to sleep away the head bouncing around. Had thought lexapro wasn't working, dr. said medicare wouldnt pay for anything else but found out my med. part d will cover cymbalta. I CAN'T WAIT!!! I might get better!!! How many of you out there keep up with daily stretches? That is all my doc keeps telling me PHYS. THERAPY over and over. Does everone else get that and do you do it. It hurts at first then I get used to it then I quit for some reason and can't get my butt out of this chair for a wk or 2!!!! Maybe it's cause I'm not medicated properly????
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08/28/2009 08:26 AM
catwhisperer
 
Posts: 15
Member

Are there any legal eagle's out here? I'd like to talk to one about my cond.

08/28/2009 08:45 AM
River
River  
Posts: 3465
VIP Member
I'm an Advocate

Hello and welcome, exercise causes me more pain unless i am in a pool. That is the only place I will exercise. The rights meds for you will make all the difference. HUGS River

08/28/2009 09:46 AM
navymom
 
Posts: 22
Member

Hi

My dr. tells me all the time to excerise and how important it is, i wish i could exercise the way normal people do but i can't. I go to a place near my home that has a heated pool about 95 degrees, i go 3x a week and exercise by using water weights and even just walking, the warm water relaxes the muscles and this is low impact on your body, you should see if there is a place like that were you live, i know it make a difference in my life, don't get me wrong i am tired and if a i miss for awhile it is painful but it is great for me


08/28/2009 10:26 AM
gratefulmj
Posts: 569
Member

This is the catch-22 of exercise. If you could exercise easily and comfortably without exacerbating your symptoms or causing a flare up, then perhaps your FMS is not so bad. However, if your FMS is bad then its impossible to exercise 5X a week (like my doc wants me to) without worsening your pain.

Exercise is the only thing that doctors say helps FMS. The research (scant at best) show that Narcotics don't help (I'm sure a good number of people on this site would argue that point) the medications that have been approved to treat FMS have a 50% rate of improving symptoms at best. In reality the 50% of people who have a partial improvement. They don't necessarily return to work, have a rich and satisfying family and social life, are able to engage in all the activities they could before the onset of FMS etc. The FDA don't make the Rx companies put that on their labels.

On the other end of the treatment spectrum we have naturopaths arguing that they have products that are as helpful or more helpful than medications without the side effects. Yet since you can't patent herbs and other naturally occuring substances, they can't afford the cost of FDA approval.

It's quite confounding living with Chronic illness Sad


08/28/2009 11:49 AM
navymom
 
Posts: 22
Member

I truly understand with what you have to say about meds, what might help some does not always help another, i have to be honest with you i dislike the lyrica commercials that i see on television, its like just take this pill and all your worries will go away. i rheum will not even consider given me this med and you know what i agree, i have a friend who was just diag. about a month ago, that is the first and only drug that they would give her, i watch my friend everyday with unbelievable side effects from this drug, i am constantly telling her to call her dr. it is horribble to see her like this and seeing her up close, i would never consider this drug either, i have from others that it does work to ease some of the symtoms and would never consider stop taken it, that is great for anyone who doesn't experience side effects, please don't mis understand me i know everyones body is different and reacts differently to different meds and great for those that it helps, i just wish they would not make it sound like this is a miracle pill because it is not, and they people who don't understand this condition just say why don't you take that medicine it looks like it helps "apparently they don't realize that these people are actors" i wish i could grab my childs hand and run, i am lucky if i can walk some days. Listen to me ranting, sorry!! I could go on and onSad

08/28/2009 12:18 PM
Auntie3285
Auntie3285  
Posts: 9182
VIP Member
I'm an Advocate

Hello Cats and Welcome to our group ~~~ we re happy you found us !!! Smile

Early on in my Fibro dx, my Rhuemy ""mentioned"" exercise but my PCP and I figure I got enough just with all the walking I do at work on a daily basis.

A few months after this discussion, I decided to just try early morning stretches and minor pulls and stretches as I think about the during the day.

They do seem to help a bit and clear my head from time to time ~~~ Now I just do them without consciously thinking about them.

It s not like I set aside a particular time of day and dedicate that time to exercising which works better for me anyway.

Marilyn


08/28/2009 01:00 PM
raynedae
raynedae  
Posts: 8219
VIP Member

I know I should exercise but I always hurt so badly the day after that it's hard to get into the routine and stay there.

Navymom, Lyrica sucked for me (and most of us hate those commercials!) but we do have members that have had great luck on it. When it works right it's wonderful. But we're all individuals and we all react differently. Personally I had great luck with Cymbalta but others haven't. I have noticed that a lot of us on this website tend to develop all the possible side effects of a medication, no matter how rare, but many people have worked though them and through trial and error have adjusted their dosages to minimize the side effects, especially with Savella.

Sometimes medications or supplements that we've tried before can suddenly work. I remember trying melatonin back in my Navy days when I was working shift work. It didn't work for me then but it's a wonder drug for me now...I slept 12 hours last night!


08/28/2009 01:00 PM
mammy
mammy  
Posts: 7217
VIP Member

Hi Cat, glad you found us Smile over here. I hope the med works for you, let us know how you do on it.

Hi Navymom, nice to meet you .

I can't do exercise, it does me more harm than good. Everyone is so different.

Connie


08/28/2009 01:36 PM
bits
bits  
Posts: 10865
VIP Member

I agree that it takes the right combo of meds to help. One must be able to do the exercises first before attempting them.

How?

Adequate pain control, depression meds (most chronic patients need them), med control of the disease itself, anxiety meds (if needed), sleeping meds (if needed) then exercise the best one can do.

Pain meds and meds to control the disease usually do not give total relief...only controlled relief which means one is still living with pain and fatigue.

I think this is all most chronically ill folks ask for...a decent life.

Hugs friends

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