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dpmora posted:
Hello everyone, I was just diagnosed however I knew it was happening 2 1/2 years ago. It took several visits to several different Dr's to get my diagnosis finally a Rheumatoid Dr. diagnosed me. I will take any advise that you all have to share with me. I think the hardest part is how to explain the pain that we are in. It seems like people think were crazy and lazy. I've always been the happiest and fun person and now its all changed and I really HATE it....
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fibroinsd responded:
Hello and welcome. Glad you found us..sorry you got this thing to deal with.

I know Mimi will be along to remind you to get your Vit. D level checked, if you haven't done that.

There is a post in the resources section started my our wonderful Nancy B...it is called member toolbox..look it up and it has lots of suggestions..such as using a heating pad, and stretching and using vitamins.

There are meds you can use..and some people do, and some people don't. They can have side effects and what works for one doesn't always work for all..

We look forward to you reading posts and commenting anytime..hopefully we can be helpful to you.

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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dollbug responded:
Hello and welcome...MiMi in NC. I am sorry that you are dealing with the wrath of the dragon, aka FM. It is indeed a very ugly and mean illness. I do hope you will check out the info here under *tips* and *resources* and be sure and review the *member toolbox* as well. Perhaps you will find some good *tools* to try that just might make a difference in the way you feel. It does take a trial and error process which does take time and effort. So hang in here and I am sure you will find the right combination of tools that will allow you to cope better with it.

I do hope your doctor checked your Vitamin D level. This is important to a lot of people these days. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. It is just a simple blood test BUT you must ASK the doctor to run it...as it is not included in the normal blood work.

Most people do not understand anything about FM...there are even some doctors who do now even believe that it is real. I think we all know though that it is indeed a real illness and one that no one would wish upon anyone.

I hope you will post often, ask questions. We have a good support group and I am sure others will chime in here to welcome you. It has been slow for the past couple of weeks. I hope this is just where people are getting ready for the holiday and perhaps are too busy to post.

Take care and good luck.


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

 
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booch007 responded:
Good morning DP.
I am so glad you found this site to lean into. It is a roller coaster of symptoms and complaints day to day. I never know "who" I am at the start of the day.

We take each day as they come.

As Cece said and Mimi too, look to the right for the tools and tips. The members toolbox is a valuable source it is all the tricks that many people have shared for all to use.

To answer your question though, it is sometimes very hard to get people to understand. I describe myself as having the flu everyday. Alot of people can relate to that. The aches and pains, energy and fatigue.

Also I am really CMP with trigger points so for that I say....it is like have 30-60 bee stings in the back and neck muscles.......

My meds are pretty right on so I am tuned up. I have a good 8 hour wellness window now. BUT it has taken a long time of fighting for this and doing everything I could to be better.

Please be sure to be hydrated. The body needs more water* to flush muscular byproducts and the help them move (like oil in a car engine). P R I C E L E S S.

So many don't realise how dehydrated they are. Fatigue and brain fog occurs with dehydration as well. Soda and coffe actually take fluid from you. Please be sure to drink at least 8 glasses a day. I only drink water noww and it is a 24oz water bottle never not by my side. It took months to bring me up to hydrated. How did I know??

For years the doctors said stretch out....well the muscles would NOT do it. Tight burning and resistant. But one morning I went to do it....and OMG it happened and I knew that was a turning part for me. I never leave the bed without stretching nose to toes.....fingers too...if i could stretch my eyelids I would.

Good luck and lean in here as much as needed, good stuff, bad stuff...questions? lean in and put it here. Our private life people really can't understand . Take nothing personal, they just have no clue and good thing...there are enough of us fighting this mess.

Good luck, NancyB
 
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dpmora replied to fibroinsd's response:
Hello,
Sorry its taken so long to repond, I've just been in a slum and not motivated to do anything. Thank you so much for your input and I'll take any advice you can give me. I did start taking 5 htp at night co q-10. it's helping a little I just started d-ribose a friend of mine recommended. I'll let you know if it is working
 
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dpmora replied to dollbug's response:
Hello,
I'm not sure if my Dr. checked my D level I go back the 18th of Dec. I did start taking 5 htp at night co- Q-10 and D-Ribrose. I'll keep in touch with everyone and let you know if this is working. A couple of people that have been using these said it helps them. Keeping my fingers crossed.
 
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dpmora replied to booch007's response:
Hello,
Thank you so much for you advice I will be using it. My Dr. hasn't put me on anything yet I go back to see him on the 18th of Dec. However a couple of people have recommended to try 5 htp, Co Q-10, D-Ribrose. I started a few days ago I'll let you all know if its working. Thanks so much
 
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meg_k replied to dpmora's response:
DP:

Remember you won't always feel as bad as you do today. There are lots of good tips and advice to lower your suffering, and folks in this Community are wonderfully supportive.

A lot of us on this site will recommend massage, acupuncture, warm baths, heating pads. I take Cymbalta and neurontin which helps me. Others take tramadol and I forget the other pain killers becase I try to stay away from them. I did not have luck with D-ribose, but I do take massive doses of Vitamin D, under advise of my MD, and I feel TONS better now that my levels are up in the 50-60 range.

If it helps, try to remember that regardless of what anyone else thinks, your situation is just as legitmate as any other health issue. Would someone accuse a person with cancer-related fatigue of being "lazy"? I think not! Nor are you!

I have heard fibro described as having a migraine, but all over your body, every day. I think that's an apt description, don't you? And I think it makes it easier for people to understand.

Best,
Meg from MN
 
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dpmora replied to meg_k's response:
Thank you so much for your support. I'm so happy that we have a community that understands what were going through, yes it does feel like a bad flu or you just been hit by a truck.

I will continue to Pray for all of us.
 
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bette_kaffitz replied to dpmora's response:
DP,

Hi, sorry to have taken so long to get back to you, but I've been battling sore hands, arms, shoulder, and neck along with my longstanding low back pain.

Listen to the people here who give you advice. We all know what you are going through. I call it my, "Yesterday I was run over by a Mack truck" feeling. You ache deep down inside. You may get migranes or an irritable bowel. You don't know where you'll hurt tomorrow, you just know you'll hurt.

There are many different Rx medications that you may try. Some of them may help. Some of them may not. The only way to know for sure is to try them. Unfortunately, many of the meds for fibro are fraught with multiple side effects. Also unfortunately, the only way to know whether you will escape these problems is for you to try the medication.

So, starting now, begin to keep a record of your symptoms, what you are trying to alleviate them, how well the treatment helps, and any problems you may have. This can help both you and your doctor to pinpoint the TYPES of treatment that work for you and the ones that don't. Also, if you have trouble with one treatment, you do not want to try it's first cousin a few years later. (I have trouble with many of the antidepressants. I cannot start my urine stream, and have to go to the E.R. to be catheterized. It happened with Lyrica and Cymbalta, but not with Savella. A clue for my doctor, and a warning for me.)

If you are offered physical therapy, try to get sent for aquatic therapy. It is much less stressful and less apt to sent you into a flare. Gentle stretches in a warm water pool can lead up to a more rigorous aquatic workout in the future, too.

Hang in there. This is a chronic condition. It is not going away. It will take patience and practice to find what works for you. And then, there will be new symptoms that need more patience and even more practice. Never give up. It is possible to function--even joyfully--with FM.

Bette
 
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francodm replied to meg_k's response:
Meg_K

You are correct, fibro and migraines are very similar - likely because they are symptoms of the same underlying condition, TMS (Tension Myositis Syndrome), which was discovered by Dr. John Sarno at NYU Hospital. TMS (and thus fibro and certain types of migraines) is very curable without drugs, surgery or PT....often within weeks/months. Check out the following for more info and many success stories:

http://tmswiki.org/ppd/Migraines http://tmswiki.org/ppd/Fibromyalgia
 
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francodm replied to bette_kaffitz's response:
Bette,

I actually kindly disagree with your belief that fibro won't go away. It is very curable and that is because it's really being misdiagnosed and is really TMS (Tension Myositis Syndrome), which was discovered by Dr. John Sarno at NYU Hospital.

Check out the following for more info (TMS is curable without drugs, PT or surgery) and many success stories

tmswiki.org/ppd/Fibromyalgia youtube.com/watch?v=2B2IE0o7diU&feature=youtube_gdata_player


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