I'm so OVER this already!!! Is this really how it goes???

[wigirl80]

Ok I was diagnosed a little over 2 yrs ago by the military and was medically discharged shortly after. I feel like I am getting worse and I don't have a doctor that specializes in it either through the VA. So basically I'm looking for more expert opinions, is common to be in this much pain constantly? I find myself tired alot and I get a lot of headaches. My doctor has me on a couple of different medications. I seem to get sick often with flu-like symptoms. I feel more irrated with people and that's not something usual for me. Is this really what I have to deal with for the rest of my life???

[singerpoet]

How many times have I thought the same thing wigirl80.
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The link above takes you to a Fibromyalgia & Fatigue center site where there is a great audio of their Drs answering questions and giving information.  Its very comprehensive and you can download their written portion, which really helps explain a lot in this complex condition. The first download page "What Happens When You Have FM/CFS" diagram really clarifies a lot.  This might help your frustration.
Been sick with this since '92 and it sure isn't fun.  Seems that a lot of us Type A personalities seem to get struck down with it, and we're harder on ourselves than anyone else could be already.
Good luck and gon't give up!  Make the most of the good moments!

[FibroBunny]

Sorry!!   Check out Fibromyalgia by Mark J Pellegrino MD.   GREAT book!!

[FibroBunny]

" is common to be in this much pain constantly? I find myself tired alot and I get a lot of headaches. My doctor has me on a couple of different medications. I seem to get sick often with flu-like symptoms. I feel more irrated with people and that's not something usual for me. Is this really what I have to deal with for the rest of my life??? "

I'm sorry you have this at such a young age hun.  But yes for most the pain is constant, medication can and does help, pool therapy (the real pt, lol) helps, i've found take large amounts of vitamin b12 (when not in a cycle) help some with the fatigue, and found for me at least that the combo of fentanly, soma (weekends only or in case of severe muscle spasm attacks or it just adds to the fatigue), Etodolac (for the swelling in my back, shoulders, neck, elbows, hands, ankels etc.), lyrica (still adjusting the dose), and prozac(for the depressed & irrated, crying cause i hurt so bad, crying cuase welll i dont know why, crying cause what's become of my life and crying cause no one gets it) have helped me a lot, at least when i'm not cycling (Oct til Jan/Feb each year, crossing my fingers this year).

Let me say that between my Pain Management Doctor and the group I went through I now just try to live as much as I can and not get down about all the meds, doctors visits and ****. I no longer listen when people tell me it's in my head, or ask if i actually feel that bad cause well "you look ok".

My PM Dr said to me one day, "Mona look, you are going to be in pain for the rest of your life. Are you going to just sit around in pain, or be afraid of doing things because you will hurt more the next day?" She went on to say  "Wouldn't it be much better to just get out and do what you want or what you can when you are able? That way the following day if you are hurting more for a day or so at least you know you had fun getting there."  I have done my VERY best to live by that statement and you should too!

Also check out

[skypeople]

I was also in the military but many years before you were.  I served in Marine Corps in 1966-67 and service connected for several things.  I hope you are pursuing a claim with VA for disability as need to have that security in your life.  If you hesitate, let me assure you that you need to also think long term in your life and not just now.  Been there and done that with no regrets.

Like you I have been dealing with the VA mostly because I cannot afford to obtain health care outside VA.  But that is not saying, the VA does not have experts, but mostly in large cities that are close to medical schools.  If you are like me, you live in a small town with (and some without) a little clinic to access and I have a PA here; but not medical expert at my fingertips.

As far as I am concenred, it is not common to be in so much pain and that in itself,says there is something wrong.  I do think that FMS is too easy a diagnosis and too many just resort to that without finding out what may be wrong.  (and it is not just the VA that does that, sadly to say)

I also have a lot of problems with headaches and being tired all the time.  I do not have much staying power anymore and seems the older I get the less I am able to do.  I may be 60 years old but sure too young to have all these problems as so many people can relate to.

I also believe that sometimes certain medications can only make the problem seem to get worse.  It is hard not to be irriated with others when we feel so bad day after day.  I am like you, that is not my usual (or at least it didn't use to be) nature.

I think the hardest thing to accept in life (especially after we have been so active and done so much) is accepting disability of any sort; especially ones that seem to rule our every moment.  Please do not be hard on yourself because you need to save your energy to do the things you can manage to do.

I remember reading something a long time ago (and still have trouble trying to manage that) is that if we only have control over 5% of our lives; that is where I focus needs to be.  We cannot control what is wrong with our bodies and that does not mean we have to accept losing control; it only means that we have to be fair to ourselves and find happiness in simpler things.  I know this is hard to accept at times and I admit that I still struggle with not being able to do the things I want.    I accept that I can no longer go hiking or live in Oregon where I just loved everything but the rain.  LOL

I find living in a dry climate has helped me some as humid weather makes me feel really badly day after day.  At least I have some good days in this climate.  I also know that I no longer do well during cold weather but not much I can do about that since I have a worse time with the heat.

just be kind to yourself and know that each day you have a good day; enjoy it in its fullness.

Is this really what I have to deal with for the rest of my life???

[benedwards1]

I was on corvalen for about 3 weeks and really felt good to where I thought I was saw 90 percent reduction in fatigue but in the past few days the potency has been declining.  did you notice this as well when you were on d ribose?  thanks in advance

[PlateletGal]

Hi ! I would strongly recommend checking out the Health Pages (look to the right of your screen) and reading various treatment plans recommended by the experts. What you can do then is print out the information and share it with your physician at the VA.

I hope that helps... keep us posted if you can !!!

[selmaS]

everyone is different.....my mother has suffered for over 30yrs with this.....she had years with no pain...it does appear to cycle in most......it does appear to increase in severity with stress......I pray u find the right dr for u and meds to control the more painful cycles...

Good luck
Godspeed
"selma"