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Official diagnosis
11 Replies
slb71 - March 1

I've been waiting for a few months to get to the rheumy. He said I have FMS. Not what I wanted to hear, but I knew it was coming. At least I know for sure what I am dealing with. He put me on yet another new medication and I am happy to say it does seem to be helping. Over the last couple weeks or so I have been feeling better. I have no doubt I am still going to have bad days but for now I will enjoy the good ones!

Now if I could just get out of the fibro fog I would be overjoyed!! Sometimes I'm afraid this is going to be my permanent state of being. Any suggestions? Dr. seems to think sleeping better will help but I do feel like I am & nothing has changed.

Anyway now that I do have the diagnosis I feel more equipped to face this head on realizing it is what it is & I can either be proactive or inactive. I choose to be proactive!

Hope everyone is doing well:)

 

January - March 1

Not sure if by fibro fog you mean physical exhaustion or trouble thinking? There are supplements available for both, and you can research them by googling for information on treating your specific symptoms.

For example, I take acetyl-L-carnitine to help with energy.

Some supplements I've read about that might help keep the brain healthy are:

alpha-lipoic acid, Coenzyme Q-10, fish oil, curcumin, huperzine and vinpocetine

Make sure to carefully research side effects and interactions, and discuss with your doctor before trying any of these. Nothing comes without some kind of side effect, and you have to make sure you don't take something that might harm your body!

Proactive helps, good for you. Glad you're feeling better!

 

Fantod - March 1

slb71 - Give it some time. You've been chronically tired for a long time. Your body needs some time to build back some reserves.

You can also try a supplement called "phosphatidylerine" which helps with memory. My nutritionist recommended this to me. Puritan's Pride (online) has good sales on it. They call it "Neuro-PS." I've been using it for quite sometime and I think it does help.

When I am overtired, nothing helps and it does no good to push the envelope. Take care.

 

Noca - March 3

Piracetam is a nootropic/supplement that can help with cognitive functions, and is what I'd recommend.

 

slb71 - March 3

Thanks for the information!

My dr. also recommended to have deep tissue massages (if I can tolerate them) and to have them often. He didn't specify how often though. So if there's someone else getting massages to help - I'd like to know how often and what kind of massage & does it help?

I am off to have one right now. so I hope it goes well!

Take care!

 

January - March 4

I found massage very helpful. It would be great to have one every day but that would be expensive!

What helped me the most was massage to help break up the knots in my back. It was painful, but it helped in the long run. I got lidocaine shots too, and the knots finally disappeared - or at least they don't cramp up and bother me anymore.

 

tinosgirl - March 4

sib71,
What medication are you on? I am now on Savella. I took some samples of a great sleeping pill, but thanks to the fibro fog I can't remember the name.I would have liked to continue it, but my wonderful health care provided won't cover it, and after two appeals, they still won't cover it and its $181 a month. Sleep is so important to heal, and really, when we have the pain we have, sleep is the only respite we get. The things is, not hurting enough to fall asleep.

 

January - March 5

tinos girl, have you tried melatonin? It is a natural supplement you can buy at the health food store. I take one time release pill in the evening, and one sublingual before bed. I use Source Natural brand. It helps. Another thing that helps some people with sleep is benadryl, the allergy medicine - but it can interact with some drugs so check it out with a pharmacist first. Other people on here have listed natural sleep products that work for them. I think one is called Calms Forte… Ambien is a prescription drug that helps with sleep. There are many others.

Good luck, you are right, sleep is VERY important, one of the most important things for fibro patients!

 

denjen - March 6

Fantod how many milligrams do you take? Do you remember how long it took for you to notice a difference? Did the people around you notice the change? Did it make a dif if you took them at night or in morning? I think I will try this and see if I can get positive results. I am willing to try anything at this point. Thanks for the info I am very appreciative.

 

slb71 - March 10

tinosgirl,
I take restoril to help with sleep. The generic form is inexpensive. I have been fortunate that the meds I am I get are reasonably priced. The most expensive med I take is Cymbalta. I have a co-pay of $50. Also the muscle relaxer I take helps me with sleep too. Since I've started taking that I have not had to use the restoril nearly as much.


January,
The massage did help me. I am very tight with many knots. It was painful but it helped afterwards. I am getting one once a week for a while. How often do you get one?

 

January - March 10

Hi slb71. So glad to hear the massage helped!

I used to go once a week (during tough times, I'd go a second time). The MT would press really hard on the big knots in my back. It was SO painful, but if I could just hang in there, the pain would start to diminish. He also did a quick back and forth rubbing on the knots. I am not sure if it was this MT, or if it was the lidocaine injections that "cured" me of those painful knots in my back. Probably a combination.

Another time, I went to a massage therapist who was very good at aligning my spine with gentle pressure. She also used accupressure and a rocking motion that was very soothing short term - but I got no long term relief. Seems my body responds to the rougher workouts! If you can just break up those big, tight knots, you will feel better!

A note -- returning to your original post about fibro-fog. I read a post by Noca about piracetam, and when I googled it, I also googled "nootropic" and read that page on Wikipedia - it is chockful of information about many different supplements you can take to boost your brain power. Right now, I am researching that area a lot because the fibro-fog is annoying the *&#^ out of me! I get flare-ups where I can't even retain what I read. Then, I get back to (somewhat) normal - so right now, while I can think, I am trying to understand this phenomenon and figure out how to make it stop for good!

All the best to you!

 

slb71 - March 11

January,

keep me posted on what you find! i'd be interested to hear it.

thanks!

 

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