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Discussion:
protocol
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Hi everyone

I know that we all have different symptoms and experiences with this illness but I am trying to get together a protocol for myself so even if I cant get better I can at least try to stabilize this condition to a degree

So was trying to get an idea from people what they think helps and what makes them worse,

I am interested in everything for day to day lifestyle, diet, supplements, medication, pacing, relaxation and anything else that helps.

It would be great if anyone can give me an overview of all of what they do, I still work part time and I know this doesn't help with the pacing so any ideas here would be great as well

I had a gradual onset and I know i have been gradually getting worse for the last 4 years and really don't want to get any worse, I know some of you have suffered a lot longer so are probably more experts than me, I struggle with my eyes with light sensitivity so don't have the option of going through the net to search for ideas so hopefully you can be of some help

I really appreciate any feedback many thanks

Luna x
Posted on 12/13/12, 05:41 am
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Reply #1 - 12/13/12  7:02am
" it would help to know what meds your on and what your work is? "
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Reply #2 - 12/13/12  7:34am
" mjadaa is right, that information would help, however I will tell you what I do. I'm only on two meds right now...motrin and neurontin, and they help sometimes. When I'm having a really bad day, I stay under my heating pad because heat feels wonderful and cold is very painful to me. I read a lot of books. FMS for Dummies is a wonderful one that offers a lot of information. That's what I'm reading right now. I highly recommend that you get it and read it. Meditation, if even for only a few moments can help. I follow a diabetic diet because my daughter is pre-diabetic and it helps her to know she has the support she needs from me and I'm not going to eat what she can't in front of her. I walk when I can.

Like you, I'm not as bad as some of the wonderful people here and I glean a lot of information from them on how to deal with this condition. The biggest thing I did was accept it, so that I could own it and then help my doctor treat it. I also have a few spinal conditions that do not help my FMS or vise versa. I can't work because of it.

Keep exercising as long as you can. Keep yourself fit and get as much knowledge as you can. Sorry if all of this sounds muddled but my brain is a little foggy today and I'm trying to keep it focused. Warm Hugs "
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Reply #3 - 12/13/12  8:14am
" hi

I work in sales sat at a desk 6 hours a day, 3 times a week, but cant control how busy I will be from one day to the next its unpredictable, I take Amitriptyline 25mg as in the UK not a lot else seems to really be an option.

Exercise is not really possible as CFS is also a problem

Thanks "
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Reply #4 - 12/13/12  8:28am
" Amytriptaline made my restless legs worse and my fibro fog.I would say stretching would help as you are sitting so long.
I make notes a lot to remind myself of things,we just went vegetarian i like it so far but dont know if it will make any difference to fibro.I wear sunglasses everyywhere all year round and use ear plugs at night .Good sleep is a must even if it takes a pill to get it.For energy i take suppliments B12 and D-RIBOSE.I get very gentle massages when i can from a registered massage therapist. "
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Reply #5 - 12/14/12  2:26pm
" Good for you Luna, I started this when I was dxed as I wanted to have some controll, however small. I think we all feel better when we have some say over things so without having read the other replies which I know will all be good I will tell you what I did. First thing I set up an hour long appt. with my doc. We went over EVERYTHING together, 5 handwritten pages. Then I asked her if she was willing to see this through with me.
Sleep is number one -so I have meds for that
Pain is number 2 so I have meds for that and I have her go permission to change things up and down when I need to -I just call and keep her informed
Other med-number 3- I also use my other meds on a need to basis, for instance if I choose to take awhile off from my lyrica, I find it works better when I need it again. Again I keep them informed.
The above seems to keep me stay out of the brain fog which is what I hate the most. I do my very best to keep as much stress out of life as possible but that also means learning how to react to it properly for me.
When I have events coming up such as holidays I start early, get as much rest as possible the day before and after. When I feel good I do what I want as long as I know I can rest later if I get wore down, when I feel good but know there are things coming up I do pace, 15 min. going 20 min resting. It just hurts to much to walk for exercise so I now swim as possible.
I make sure that there is not a task left only to me that is important, such as bill paying. Once in a bad fog I bounced alot of checks, expensive lesson learned. I also take time EVERY day to do something I enjoy.
I take vitamin d, b complex as needed, fish oil, calcium for bone loss I have and here are my meds
Lyrica 300 mgs seperated out doses daily
hydrocodone for other pain issues besides fibro, 3to 4 a day
Amitriptylene 50 mg nightly for sleep
xanax .5 mg nightly to get me to sleep- sleep has always been a huge problem for me
Lexapro 30 mg daily
Requip when needed for months at a time due to reatless legs
muscle relaxers when needed
melixicam for arthritis
Hope thats not more the enuf info!
I decided this fibro would not define me or my life and yes there are times when I still cant do what I want but for the most part I am content and at a low level of pain so I think thats pretty good, Much luck to you on finding your way to do this. I have also found I have to get very organized so that when I cant think straight I dont have to as much but that is another issue!Lol! "
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Reply #6 - 12/14/12  6:37pm
" For a good run down of treatments and their relative effectiveness, especially alternative treatments, trying clicking the TREATMENT tab at the top of our group home page. It gives a list of everything people have disclosed they are using/doing and how effective they feel it is.

That chart isn't all inclusive but is a good place to start. When I read it I found it interesting that members rate a lot of the non-medicinal approaches as more effective than the so-called official fibro drugs like Lyrica.

I think your ambition to stabilize/manage your symptoms is spot on. Fibro may not be curable but over time we can find ways to minimize things a bit. Of course stress, illness, trauma, tiredness are pretty much guaranteed to temporarily make your fibro flare.

Best of luck. Let us know what you come up with. "
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Reply #7 - 12/17/12  2:59pm
" I am fortunate that I can work 4 days(8 hours) per week and still be considered full time with benefits.

I use the following:

Lyrica, Cymbalta and hydrocodone for pain.
Xanax and Benadryl for sleep.
Supplements are multi, vitamin d, fish oil, flaxseed oil, vitamin c, lysine, and magnesium.
I go to water aerobics and yoga (these are especially good for fatigue and pain). I do some walking and weights.
I avoid sugar and artificial sweetners.
I limit caffeine and alcohol.
I drink lots of fresh water and green tea. I use lemon in them also.
I get a massage monthly.
I have a wonderful husband, family and pets which help too.
And I limit stress as best as I can! This can be the hardest one!

I hope you can find things that work for you too :)

Pam "

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