Fibromyalgia Community

I was diagnosed four years ago but have had it for quite some time. I didn't know what it was. My husband of 30 years, and I sleep in separate beds. He doesn't understand that it hurts to sleep (when I sleep) with him. It's hard to understand, myself. It's been hell on our relationship. But he's stuck it out with me so far. I'm lucky to have found a good doctor who is familiar and believes in FM. People with this condition/disease/whatever it is, need to talk about it to inform others so it IS better understood. I'm still searching for a medication that the side effects don't make me cry all the time, angry at the world or feel like I'm losing my mind! I gained 45 pounds in four months on Lyrica; cried all the time and got very little sleep on Cymbalta and was such a bitch on Savella, I couldn't stand myself! I took Neurontin for over three years and the doctor stopped that. I also just recently had disc replacement in my neck and hoped that the fibro would let up after the surgeries, but hasn't. . I'm on a mission to find the "perfect medication".

Good morning,

You know I see so many patients with issues in their health that I wonder if there is a support group in your area for people with challenges.

A man who has issues too would be more understanding of a day that is not so good....

Maybe an idea? Diabetics, Heart disease, Arthritis, Gout....these all have bad days mixed in there. EVERYONE NEEDS love. Maybe shopping among the bruised would be a better option then looking among the well and trying to fit in?

Just thinking? My DH has medical problems and many of them now, so we are neck and neck in not feeling well most of the time. A front put on for the public but we know eachother pretty well....

Good luck.........Nancy B

OMG.....I do not mean to the bad person who is going to POP YOU BUBBLE*....but there is NO PERFECT MEDICATION...MiMi in NC....and I have been blessed (or cursed) with dealing with the wrath of the dragon, aka FM....since 2005...and I think even earlier...but 2005 was at its worse...

There are *tools and tips* though that will help you cope better...normally it takes a combination of things that will do the trick...not just one or two...and you have to figure out what will help you...we are all different and what helps one may or may not help you...it also takes a trial and error process which does take time and effort for you to find the right combination....so hang in here with us...I am sure you will find all sorts of things to try here...

For me...I am a *vitamins and supplement FMer...plus other things as well...I tried several different medicines but found nothing which really helped without causing side effects...and to be honest...I did not need something else to deal with...

I also use a heating pad as needed....(this is a must for me)...stopain spray (good stuff found at walmart for just under $....drink lots of water and only water, for the most part...watch what I eat and do gentle stretches and exercises....which I have found to be a must....we FMers must move...regardless of how bad we feel...I also take a hot shower at night using lavender bath salts in a stopped up drain...(this helps the body to relax so that I can sleep better) Sleep is SO important for me...and it makes a big difference in my pain level...I also sleep in a recliner...(not by choice though)...

OK...learn all you can about FM....it is a mean and ulgy illness...but there are ways to beat the pain...try different things...

Learn how to pace, pace and pace even more...do not cross your line...because IF you do...you will surely pay...which is not good for the mind or the body...

Check out the info under *tips* and *resources* that you will find to the right of this page...

Vitamin D....ask your doctor to check your Vitamin D level...(this is important)...low Vitamin D can cause additional pain for some of us...and this is a cheap fix...but like with anything else...it takes time...

For whatever you decide to try...you should allow at least 6-8 weeks of whatever you try...before deciding if what you are doing is really making a difference....

And....if and when you do find the *perfect medication*....please tell all of us....so that we too can try it..

Take care and good luck...


MiMi

Hi... Welcome to our family... It is sad to see new people with FM but always happy to make new friends... You have however come to a wonderful place for love and support... Plenty here to go around...

It is so hard to explain this and not push people away... I found that these 2 webpages do help tho... I don't have a boyfriend my Mr.Right died last year... But he did everything to understand all my illnesses and help me keep life in perspective.... I still think he is up there being the angel kicking my buns at times lol...

Sorry I can only find one... the spoon theory didn't come up right... If anyone knows it and reads this can you please post it for me...
This is a great one tho...

http://www.fmscommunity.org/lettertonormals.htm

It has helped many loved ones understand... It even helped me understand...

To me before I can ask others to understand and accept my illnesses I must do so... Yes I said illnesses... I have multiple... and some days they are just so confusing lol... Mine sorta over lap.. have similar symptoms and then very different... I have to categorize my pain so I know which one is being a "pain" lol... FM is always the top of my list... always there... just to different degrees at times... The others are suppose to go in and out of remission for years until they just hit... like some yr my MS will have me crippled and some Day my Parkinson's will as I put it swallow me... But my RSD will go in and out of remission for life... I hope lol... I think... They think... And my FM has never gone away since it hit... always has caused pain... just to different degrees as I said... And the {as they put it} structure pain... I want to be a medieval structure if I must be one ... lol.. will never go away...along with the nerve damage and neuropathy... and some internal problems like 5 digestion problems... I learn about them all... or we sit down and learn about them together... I try not to push my loved ones away but I am not perfect... Some days I want to push me away lol... I have found that the good ones aren't going anywhere no matter how hard I push anyway so I might as well just share life with them...

So life keeps going and is a daily interesting challenge... Never knowing to what degree I will be quote disabled lol... Or even how or what I can eat... I never know till I take a bite if I can eat... I only know I can eat very few things and most of them are liquid... So going to a buffet is a total waste of money and I love my shrimp buffets... Making plans for this afternoon or tomorrow or forbid next week... May be a total let down... for I can feel good this moment and very very bad the next... yet alone looking at tomorrow or next week... It is always I will see... If I can I would love to... And I am always ecstatic when it works out and less disappointed when it doesn't...

I learned that the more I understood my illnesses the better I understood myself and believed in my pain... For FMers a pain so few believe in... My best advice to you is to believe in yourself and your pain and never let anyone including drs discount it or toss it aside saying if only you weren't depressed... or lose some weight it will go away... or quit smoking it will disappear... Or it can't be that bad... This is for real... Believe in you and all that this pain delivers... the way our life changes... the way we change... Acceptance is what I strive for every moment of the day... Thru it I find inner strength, peace, and happiness... and a reason to live on... One being to help others live a better life with their illness...

got too long here... take care...

love... Jan/Dakota

I guess I am weird. I never understood why you would lose friendship or relationships over having FM.

I understand its painful, I was diagnosed with it almost 5yrs ago.

I guess I refuse to let it dictate my life in anyway. I will say I am a private person so I will not discuss it with anyone, that includes, family, friends, co-workers,

I have been married going on 24yrs & too this day I do not discuss my health issues with my husband unless it is a "must", like needing to have surgery...

I guess I refuse to let it rule my life..Yes it is painful at times, but I only live once...

Yes, everyone needs some love, that's so true. It's so hard to meet people when we get worn out from taking a shower and dressing. Who has the energy to go socializing?! But, we must push ourselves and be among people.

You have to look for compassionate people to be around. When I figure out that someone is one of the bully types, or selfish types, I focus my attention elsewhere.

Are there interests or hobbies that can get you out meeting people like yourself?

I'm so sorry that you are having so much trouble with your relationships. I was told I have FM by the VA. Didn't know what it was nor ever heard of it. My husband at first could not understand the pain and tiredness. I found a why to descripe the feeling. I told him it's like having a bad bruise all over esp. around joints. That we have it changing from day to day but never really clear of it. I have a shedule of on and off days. What I do is house clean one day and the next I'm down for the day. I've found that I feel much better on this routine. Of course this can only be done by people that are part-time or do not work. I take Gabapinton and Cymbalta. They don't take the pain completely away but take the edge off. Heat also helps. Take care and know you are not alone and if the VA recognizes it, it's for real.