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renafinney posted:
Hi, I'm new to the group and was diagnosed with Fibromyalgia a year ago. It's was a rough journey to diagnosis and yet the challenge remain, the biggest of which is medication that works...well anything that works. Most days my pain is totally of the 1-10 chart. Yet, I preserve. this past February I suffered a mini-stroke and they they never really figured out why since I wasn't at risk at all. So, that leaves stress which I have plenty of. Working on maintaining a positive lifestyle and trying to do away with all stress. If my pain level was managble the stress could possibly ease up. I'm open to any and all suggestions. Glad to be with the group.
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BetteK responded:
Rina,

You've really had a tough year. Hopefully, things will get better. Give your doctor and your body a chance. Often it takes 6-8 weeks to see if a neurotropic drug is helping. Added to this is the fact that most of us need to use a combination of medications to get the best results. And, oh yes, some of us (for the Lord only knows what reason) have nasty reactions to many of the drugs used for fibro. (I cannot start my urine stream and wind up in the E.R. geting catheterized.)

Now, while you are waiting to find your own magic potion, find out what eases your pain and your stress. Some of us need Vitamin D, I need a long, warm shower every morning and a longer, warm bath every night, some of us do meditation, some of us pray, some of us do yoga, some of us go for a walk.

About your pain level, one Thanksgiving around 3 a.m., I woke up crying and didn't have the ability to think of why. I had been having a bout with daily migranes. That night/early morning, I got a sinus headache on top of a migrane. I was in so much pain that I didn't know where the pain was. I couldn't even think. That was the only time I had true level 10 pain since this nightmare began in 1972. If you can tell the E.R. doc or your family what hurts, it isn't level 10. Level 10 is so bad you don't know where you are or what is happening around you. You never want to experience level 10.

Levels 1-3 If you're busy, you may not even realize you are in pain, but if you lay down and try to sleep, you know it.

Levels 4-6 You know you're in pain. You feel it even if you're doing something you love. With a lot of pillows, a recliner, and a few pills, it's possible to get comfortable and feel a little better.

Levels 7-8 No matter what your position, no matter what your meds, you are in pain. You will not be able to sleep AT ALL in this condition. You can walk and talk. You can tell others where the pain is and what started it. You are aware of your surroundings. Most of all, you are aware of your pain. That's all you are really thinking of by level 8.

Levels 9-10 Things get a little dicier here. At level 9 there are times when you are coherent enough to explain things and are usually aware of where you are (home, work, the E.R.). By level 10 you are incoherent. You cannot distinguish your pain from your surroundings. You may not hear others' voices. Anything you say will be on the order of groans and moans.
If you are allergic to any medications, you better have some kind of MedicAlert I.D. on you, because there is no way you will be able to tell your medical team this info.

I hope none of those here ever experience Level 10 pain. Once in a lifetime was enough for me.

But WE ARE SURVIVORS.

BetteK
 
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rosielou responded:
Hi Rena,

Sorry to hear of so many challenges for you. I haven't found any Fibro meds that I can take, mostly because of conflicts with migraine meds. However there are some pretty good herbals that can help you deal with stress.

Rhodiola is well known and studied as an adaptogen. You can take 200-500mg per day (all before noon to prevent sleep disruption.) Rhodiola has been very helpful to me. You might want to look into that and see if it's something for you.

RL
 
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booch007 responded:
Good morning Rena,

You didn't say what you are taking and what has failed.

We are all different and take different meds but usually in the same classes....a muscle relaxant, an antidepressant and something for pain. Also many supplements. Remember something important though, WE ARE ALWAYS IN PAIN...our meds turn it down (and for me, distraction can take care of the rest so I have a day).

Please take a minute to look in resources for the MEMBERS TOOLBOX, it is helpful to see what people do across the board to feel better. I also say you should read under Dr P up to the right to see his words of wisdom and assistance.

I want to welcome you to the fmily, but I am sad you have needed to find us. We are so many........it is so sad that we are maybe two steps further along from when I joined years and years ago. Not much accomplished in research.

I wish also to say becareful with your meds, we are often sensitive and what is the norm dose may be too high for us. Start small and see...go slow and watch for side effects and benefit. I was really in trouble with Cymbalta but my little baby savella is just right! The bow on my box. I am hopeful you will pass this hurle in the path of living with this disease.

Seems you go from fighting the dragon, to draggin the dragon and then finally dancing with him............he is always with us and we are always in trouble, but you can push back and get the day ahead of you inline and have fun and carve out a life. It is just different than it used to be. Good luck and glad you found us. Nancy B
 
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dollbug responded:
Hello Rena and welcome....MiMi in NC....Sorry that you are dealing with the wrath of the dragon, aka FM....but I am sure that soon you will find something that will help you cope better.

I am one of the FMers here who tried different kinds of medicine which might have worked to help me but did NOT work without causing other side effects. We are all different though and it does take a trial and error process which takes time and effort....there are no quick fixes that I am aware of and nothing which works overnight. Anything and everything is a process. Hang in there though as there is surely something that will make a difference in the way you feel, you just have to find it.

I finally did my own research and found vitamins and supplements and doing other things as well. Am I painfree? No and I do not even expect to be....but I am so much better now than I was when I first got sick. I take the following: multi vitamin with extra D, Omegas, Fibro Response and Magnesium Malate (found at vitamin store) (I only take one of each) plus others....but these are the ones which I think help my FM pain. I also use Stopain Spray on places where I just can not get eased....(this is good stuff) take a hot shower right before bedtime using lavender bath salts which help the body to relax so that I can sleep better. Sleep is so important for us FMers.

FM creates a vicious cycle for a lot of people....some of us have multiple health issues as well that we must also deal with. I have bad knees and I take a joint supplement to keep my pain level down. (it has recently been discovered that these can also pose eye problems for people).

I also drink plenty of water....actually, water is almost the only thing I drink. Doing gentle exercises and stretches each day is also important. We, FMers, must continue to move, regardless of how much we hurt - this is really important.

I have also found that keeping myself on a schedule of sorts also helps....getting up and going to bed around the same time, eating and taking my vitamins and supplements around the same time as well.

Perhaps the most important thing for me is learning how to pace, pace and pace even more....in anything and everything that I do.

I would also encourage you to be sure and ask your doctor to check your Vitamin D level, if you have not already done so. Low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well.

OK....I hope you will check out the info here under *tips* and *resources*....as I am sure you will find other good *tools* that perhaps you have not thought of trying.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....



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