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ThorPrice posted:
Hello everyone,About three years ago I was diagnosed with fibromyalgia, chronic fatigue syndrome, myofascial pain syndrome, and bipolar disorder. The past three years I have become totally disabled from the combination of many symptoms and the severe pain and muscle weakness along with severe fatigue. Just watching a sink full of dishes would cause me great pain and weakness. My pain has been continuous as I have it every day and night. I can never get comfortable I am totally stiff and sore.
about a month ago I was diagnosed with Dercum's disease. However I now know that I have had this for about 30 years. I know this because I've battled all of the conditions on and off during that time and it all started when I was in college and I first developed a couple lumps in my upper arms.
Anyway I have tried so many different medications and treatments for my symptoms with no relief. One reason is because the protocol for fibromyalgia treatment does not include any narcotic pain relief. However now that I was diagnosed with Dercum's my pain doctor has put me on a fentanyl patch. So for the first time in three years I have actually had some relief. I am on a fairly low dose but my level of pain is drop safe from nine to a six or a seven. To me that is remarkable as at least I have some comfort however upon movement I still have quite a bit of pain the lumps are somewhat sensitive and I get a lot of weakness with movement. Of course it does not help with all the other symptoms as well like the fatigue. But I actually sleep better as I'm not in pain all night. But I still continue tohave pain and numbness of Fibromyalgia and the chronic fatigue as well have other symptoms. So it will be a constant battle to find comfort. Any marginal improvement is so welcoming when you are mentally and physically beyond exhaustion.
So I just wanted to introduce myself and hopefully I can be a contributing member to identify with others as we all suffer from day to day with all our symptoms. Thanks for taking the time to read this. I hope everyone well. Oh yeah one other thing with all my pain and tendinitis in my arms as well as weakness I cannot type. I have dictated this whole comment using voice recognition software. It is great as I can dictate letters and use my voice to navigate all around the web without having to press keys.
Thanks,
Jeff.

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angelldakota responded:
Dear Jeff... I would like to welcome you to our wonderful group... Here you will find friends that are here for you thru thick and thin... and you are not alone anymore...

What an ordeal you go thru... I am so glad you have found some relief... I disbelieve that narcotics don't help FM... I am on narcotics for a few other reasons but when I don't take them my flares when they hit are super hard... taking them makes the pain level go down a lot... at least to where I can deal with it...

My pain management Dr has me on 2 FM meds and my neurologist has me on a nerve/seizure med that helps FM... Then I have several other problems and I am on Ms Contin and Percoset... I seem to do well on the mixture at least for the most part I am down from a level 9 to 10 pain level to a 7 to 4 pain level... I can survive on that... and that includes my FM symptoms...

I hope you can keep doing well... We have a couple of things that might further help you... to the right of this is 2 boxes labled resources and tips... under them is a couple of messages named nutrition and vitamins and members toolbox... They give newcomers some great information as to how you might deal with this illness... the members toolbox was written by the members here...

We also have a great Dr here who is not only a specialist in FM but also is one of us... He has FM... If you wish to ask him a question just write Dr. P in the subject bar... It may take a bit for he has a busy schedule but he gets to us asap... He is both knowledgeable and makes us laugh...

I hope you also have your Dr check your vitamin D... some of us have more pain if it is low... You usually have to ask for the test it isn't one that is normally taken...

Please take care and stay positive... you are already an asset to our group... you remind us of where we have been... and make us feel less alone... and in my case... I know how multiple problems feel... and it may not give you much consellation but to me I have been very ill lately unrelated to FM and you joining us has made me feel less alone again...

Thank you for being here... come back real soon...
When you need a friend, reach out to a stranger and you will have one. If you need help, help someone else. if you need to cry, find someone already crying and celebrate life. Love Jan
 
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xperky responded:
Jeff - After googling Dercum's, I really feel for you. It makes having FM look like a walk in the park! You will find many of us dealing with chronic, widespread pain much like yourself, so we can relate to some of the problems you face every day. Many folks here are dealing with multiple issues too. You mentioned that constant battle to find comfort, and all the fatigue. It's no fun, is it?

Technology has been a great help to you and all here. Imagine years ago, the isolation of disabled or misunderstood patients?!

It's nice to meet you. I'm happy for you that you are finding some pain relief lately.

Margaret
 
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ThorPrice replied to angelldakota's response:
Thanks Jan,

I appreciate your reply. Over the past 3 years had tried just about everything to relieve my pain. Every combination of meds there are. Yes, also had check of Vitamin D, it was low. Also, pool therapy, accupunture, masssage, heat wraps, TENS, anti depressants, well the list is endless. I have been diligent in my research as my symptoms were so severe. Anyway I could not get relief.

Well I know I will struggle with all these symptom but I'm trying to put up a good fight.
 
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ThorPrice replied to xperky's response:
Margaret, Thank you. I know that Fibro is no walk in the park. I just got lucky and had the priviledge to get Dercum's as a bonus prize. We all have a lot to deal with on a daily basis and it is nice to be able to share with others.

The best Technology is the internet so we can all communicate. Have a great day!

Jeff
 
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kimberlyglasgow responded:
Welcome Jeff! I also am a newcomer (I've been a part of the FMily for about 4 days now) and everyone here is wonderful! It's helpful to have a place to come and vent when you need someone who doesn't talk down to you or gloss over what you're feeling. Even though we all have pains of our own, we feel for everyone else as well! It's a welcome change for what I deal for in my day to day life.

I have FM, carpal tunnel and bipolar disorder. I was diagnosed with the bipolar 11 years ago, carpal tunnel 10 years ago and FM only 2 1/2 years ago.

Be strong and hang in there, and always feel free to come here and vent when you need people who understand! *soft hugs*

Kimberly
 
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1wareaglefan responded:
Hello, Jeff, and welcome to the FMily.....sorry you had to be here. And it does sound like you have more than your share to contend with.

I've been diagnosed with fibro since summer of 2008, plus I have other neck and back issues that cause chronic pain. I'm one of those people that narcotic pain relievers help, along with Jan. I can assure you, there are others! It makes me angry when doctors refuse to even consider that as an option. I just got to the place where I couldn't take it anymore, and my PCP prescribed it for me. I think if doctors had to go through the pain day in and day out, they'd sing a different tune!

Anyway, as you read here, you'll discover other ways of helping the fibro pain. I guess it takes a combination of many different things, plus trial and error, to see what works best for each person.

We're glad you found us here, and I know you'll receive lots of encouragement and support from these great people.

Take care....Elizabeth
 
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NeNe_11 responded:
Jeff
Welcome to our awesome group..Im glad you found us, as this has been a great source of support me & sure it will be for you as well. Also, its so cool that you have found an easier way to communicate! Im so grateful for the web-its hard to think back to what we did without it!

I have been trying to deal with fibro & migraines for 10 years now it hasnt been easy. I , like you, am in constant pain 24-7 as my current meds are not helping & Ive been on just about everything else with not much luck either. I just use alot of heat ( hot showers, baths & heating pads), lots of gentle stretching, drink lots of water & eat healthy, take vits & supps. I so wish there was a magic pill to take for this, but there is not. That would be too easy!! Life is challenging, especially for us with disabilities...I just pray each & every day for the strength to go on.

Again, welcome & have a good day.

Denise
 
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ThorPrice replied to kimberlyglasgow's response:
Hey Kimberly,
I also was diagnosed with bipolar as well over ten years ago. That adds a whole other dimension to our treatment. Many medications effect my mood. So i have had to stop many of them as they would cause manic episodes or deep depressions.

Keep up your struggle to survive through each day. it's what we must do.

Best wishes'
Jeff
 
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ThorPrice replied to 1wareaglefan's response:
Thank you Elizabeth,

I know how it goes, I have tried many tools over the past few years. I have taken it upon myself to actively research and to try different things to survive each day.

Medications are a funny thing. We keep expecting to take a different one and instantly feel better, but we don't. But we do need to keep trying. Right?

take care
Jeff
 
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Booch007 responded:
Dear Jeff,
I didn't read what my fellow fmily wrote at this point as I have alot of reading to do. But I wanted to welcome you and share my story as we sound similar.

I have MPS, the lumps(trigger points) are a bummer and so tender. In early years i slept in a chair as I couldn't lay down on them, nor could I as my neck muscles would spasm and choke me when gravity stopped pulling the neck muscles down.....this has passed.

I see a neurologist with a specialty in neuromuscular diseases. She gives me trigger point injections in there. It releases the muscles and make me so much better. This did not happen over night, but it happened. I am very pro-active to be the best I can be and drinking water and nothing else for my muscles helped so much as did chosing green vegetables over other colors for the detox ability they have.

The board here told me of the memory foam topper for the bed and that was the first heaven, full night sleep without tossing around and around to *get off them..I had.

Maybe it can help. First few rounds were a problem as it woke up alot of stuck and spastic sites...you have to want this and be persistant.....I am lucky that all are covered and I pay nothing to receive them.

I have a book called " FM and Chronic Myofascial Pain" a survival manual, by Dr. Devin Starlanyl...amazing to help work the bad spots or figure out why I am tight and can't move.
Written in general words to understand...it is a Bible for this issue.

Each day I would try and heat and stretch and do what was asked but the body wouldn't (couldn't do it) It was after the change to water and green veggies that suddenly when I stretched in the morning..IT WORKED. Now you have many other issues and when you hurt the last thing you want to do is move. But with this problem, it is a catch 22...if you don't move it will get worse.

I hope my story helped and please look for the toolbox at the left somewhere...it is helpful to learn other tricks people do i their toolboxes to survive. KEEP YOUR HEAD UP. It can get better when you tune up a bit. *He is never gone though :(

Hugs for a better day today for you..............Nancy B
 
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mawillis58 responded:
hi Jeff,
i'm also new to this community and it's been a Godsend! i don't feel like the lone ranger anymore. fm has a fitting name here - the Dragon.
i also have many other ailments, one of which is bipolar. i take lamictal and lexapro for it and i think maybe they have helped with the extreme sensitivity to touch.used to be, when i'd go to bed, i couldn't stand for the sheets to touch my skin and my legs would jerk like crazy. that has slowed way down. i don't know if those meds are what's making the difference or not, but i'll take anything i can get!
i'm glad you found this place to come to. this is a real community where you'll always be heard and understood.
best wishes
 
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mymyrt replied to mawillis58's response:
Hi, Jeff. I read your song first and then read your story. I haven't looked up your bonus yet, but I will. I just wanted to welcome you. I too suffer with major depression, most of my adult life. I am very med-sensitive, and have already switched from one that helped my depression but made my heart pound, fatigue worse, and made me feel out of my body. The one I'm on now helps very little with my depression but I see my head doc in two weeks, so we'll see. You are a brave soul, like so many here, to put everything out there. I don't believe there is any negative judgment here, since we all share the same canoe. Bless you, Jeff, grab an oar, and we'll all paddle together.

Joan


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