I am so tired of not feeling well I wonder if the side effects of all the meds I am on are worse than the MS...or maybe this isn't side effects and is the MS!? I WANT MY LIFE BACK! I have so much to do everyday and I'm just so tired. I guess I just needed to vent
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I tend to believe that delaying the progression of the disease is worth the side effects of the meds.
Perhaps someone could offer some useful tips on how to reduce side effects so that you don't need to go off?
In my case, I used to have enough site pain following my daily Copaxone injections that I took OTC pain relievers every 4-6 hours, round the clock. When I noticed that I did not have pain in abdominal sites, I obtained approval from my MS specialist for every other day injection, using 4 different sites in my abdomen to rotate. Pain gone; problem solved.
Perhaps you can find a way to solve your problems.
~ Sheralyn~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
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Had the same problems, a copaxone nurse came out and retrained me on taking my shots. I found out I was putting the needle into a muscle and that caused a lot of pain, next she told me to put a hot cloth on the place I was going to take my shot, then take my shot. hence, no pain. my wife filled a sock about a third full of rice, tied a knot in it and I put it in the micro about 40 secs. works great.
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Copaxone nurse came out to retrain me too. And prior to that, I'd called Shared Solutions more than once, requesting advice. Neither helped.
But, that is sort of my point. What works for one, may not work for everyone. Keep trying. Copaxone is so much more effective at controlling my MS than a previous med, that It was worth working hard for a solution.
~ Faith~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
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Originally posted by amyrising View PostI am so tired of not feeling well I wonder if the side effects of all the meds I am on are worse than the MS...or maybe this isn't side effects and is the MS!? I WANT MY LIFE BACK! I have so much to do everyday and I'm just so tired. I guess I just needed to vent
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I am having a very hard time right now. My neurologist suggests that I see a psychiatrist or maybe she said psychologist. I can't even remember My job is getting to be too much for me but I can't afford to lose it, I am the major breadwinner in our family. I feel like my life is over, all my dreams and hopes of the future have been smashed. I know I need to deal with it...but I just don't have the strength right now. I am useless as a parent, I use all of my energy and strength just to get through my work day.
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Originally posted by amyrising View PostI am so tired of not feeling well I wonder if the side effects of all the meds I am on are worse than the MS...or maybe this isn't side effects and is the MS!? I WANT MY LIFE BACK! I have so much to do everyday and I'm just so tired. I guess I just needed to vent
I just don't get it. What is the purpose of this crap.
I take the meds because I don't want to get any worse, but oh boy.
No way will I do the diapers and full-time wheelchair and a full-time babysitter.
My sister always says "this to shall pass" NO NO NO NO IT WON'T. SORRY.DIAGNOSED=2012
ISSUES LONG BEFORE
REBIF 1 YEAR
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I don't know where my line in the sand is yet. It does keep moving a little bit further away.
It's incredible what you can put up with when it actually happens.
The thought of it is the worst thing. Wheelchair? Not there yet, but let's face it, it would probably be useful.
Diapers? Not there yet, not looking forward to that one. But again, useful.
Full-time carer, that might be on the other side of the line.
My biggest fear is that I will cross that line in the sand, but have lost too much mobility and too many marbles to do anything about it.
It has been 16 years, I've lost an awful lot, but it's still bearable.
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Is it all worth it?
It depends what "it" is.
If "it" is all the medications and treatments, that is up to you to decide.
If "it" is the life you have? I think life is still great!
I did Avonex for a decade and got tired of the side effects and decided to quit all treatments that detracted from my life in anyway.
Just clean gluten, lactose free diet and exercise.
Diazepam, Zolpidem, Immitrex as needed, MMJ everyday. That has been my program for the past 5 years.
Am I better off this way??? I don't know. I feel better. I have the illusion that I am in control of my MS. I have also spared myself the stress and expense of dealing with expensive scary drugs.
There is no guarantee that I am not doing harm by not using a traditional treatment...
However I do know over the past five years I have spared myself at least one year of being sick with side effects.
Sure, there are people out there that have had great results on the chemical path... But it is not the only way to fight back.
I just try to have a grateful heart and enjoy life as much as possible. Keep as fit as I can. Try to think happy thoughts, etc.
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