Fibromyalgia Community

It IS painful and everyone here knows it.

What else are you doing for yourself aside from medications?

Dear Flower,

You are not alone in your pain and frustration. You just have to keep trying until you come up with the right answers for you.

Some of the things that help me are: music, relaxation tapes, long, hot baths, a chair massager (since getting regular professional massages is out of my reach), soft sheets, bras that don't feel like they are cutting into me, a memory foam mattress topper, my sweet dog, Sampson, my family's support, easy exercise like walking or swimming, positive affirmations, a few close friends, supplements (vitamins B12, D3, women's daily, Calcium, magnesium and zinc, glucosomine, chondriotin and MSM, fish oil), soft stretches and meditation.

I will hold you in my heart.

Soft hugs,

maggie

It took me 20 years and over 10 different doctors before I was even diagnosed. We are still in the trial and error phase medication wise to see what works for me. I agree with Maggie Vit D and B12 are so important! I get a B12 shot once a month and take a 2000 mcg B12 tab daily and I take prescription Vit D 1000 IU daily and Calcium D (1200 mg of calcium 800 IU of D). Heating pads and hot baths/showers are a must for me. I have a wonderful and understanding hubby, the rest of my family not so much. I have 2 gorgeous dogs and 2 sweet loving cats that seem to know where mom hurts and they will sometimes act as a live heating pad for me. I also try to use distraction to help take my mind off of the pain. It works up to a point. My rheumy gave me a pamphlet that said something about most NSAIDS aren't effective in fibro patients as our bodies don't utilize it properly or something like that. I will have to find my pamphlet so I can be more accurate about that part. Check out the tricks and tips and see if you can find something in there to give you even a little relief...and I will hope and pray that you too find something that works for you.

I have just started a new drug called Savella.My MD says this is more of a nerve pain med and is not a nsaid. Also, I have started seeing a chiropracter and I Swim when I can. Walking helps also since I live in the country. And having a supportive Husband and Son I try to not let things stress me out.I'm trying to accept this and I just deal with this sometimes an hour at a time. I have God on my side and a great Friend support system.

Thanks so much Maggie. I appreciate your prayers and kindness

Yes my MD finally explained to me that most Doctors do not recognize Fibro as a painful disease. That I should leave the pain clinic alone.I have osteoarthritus as well and they want to give me injections for that. So I have been blessed to find a Doctor who at least will explain all of this to me.The hardest part of this is that I have always been the person that everyone comes to for projects,get togethers, help with anything and have always been there to help them. Now I have to learn to say no!! and that is very hard for me to do.I am the leader not the follower and now I have to think about me for a change. That is very hard.

Sorry, I have never met a doctor that did not recognize FMS as a painful condition. Where do you live? Perhaps it is mainly a geographic issue???

Take care, Annette

It sounds like you're trying a lot of positive things for yourself. Thank goodness for supportive family!

I live in NC and most doctors tell me they cannot even write a pain med for this. Wow

Sorry you are going through this, I too went through the same thing many years ago, it took me along time to finally get someone to do something to help me , The whole issue with this is They don't know what causes it and alot of Dr's dont know what to do or how to treat it, I heard many Dr's say they don't believe in fibromyalgia , so I got mad and said fine, if it's not that, than find out what it is, I am in pain and something has to be done, sad but you have to keep going untill you find a good Dr that is willing to figure it out with you, because they can write a pain med for it. I know in my state they have to answer for every script written, but if you have a good Dr. he will want to help. The main thing I changed is stress, I stay away from it, keep it out of my life as much as I can, I even had to put some people out of my life or at least a distance, and change to a slower life style.. Best of luck and hope everything works out.. Doris

Yes Doris I also had to change how I deal with people. As women we are our worst enemies so, I do believe this comes from stress. I have people who don't understand because I look fine on the outside. My husband of 31 yrs. has had to do a lot more than usual but,I'm lucky he is so supportive. But,real friends will ask what they can do and the others just have to be let go. God Bless

I can't believe there isn't one dr out there that believes in our pain... Altho I had 2 drs not believe in mine and my pc says I can't be feeling pain on the meds I am on now... but I have found drs to believe in me... I am not crazy and this pain is for real... I have multiple problems but this type of pain is FM... When that semi rolls over me and I hurt from one end to the other without injury I do find relief in ain killers... no nothing takes away all my pain... but it makes it tolerable... sometimes... and sometimes the mixure of my FM, RSD, MS, and Parkinsons is too much for my meds to handle... And I have to add rest and tossing and turning in bed... more light exercise and lots more prayer... but some of us do get relief from pain killers and you may need to find a dr who not only listens to your pain but will be willing to try to help you...

My pain level with the pain killers is around a 3 to 5 but without I am around an 8 to 12... 3 to 5 is tolerable and sometimes I can even wash my own clothes and some of my sons and his kids... I can do the dishes... I can play with my grandkids instead of just watch a movie with them... I can get a bear hug instead of tell them to be gentle when they want a hug... and I can think insted of stutter and be totally confused... My medications are strong but don't make me sleep... don't make me high... don't interfere in my life... if they did I would be taking too much... I am on morphine 3 times a day and hydrocodine up to 4 times a day for breakthrough pain... I am also on tramodol and soma... I don't abuse these drugs and take them regularly without any addictive problems or symptoms... I have physical traumas too... and they also help the pain from them... All in all I feel myself lucky to have finally found someone to listen to me... I pray you do too...

It is sometimes hard to find that certain dr that is willing to see that our pain is for real and it is not a mental problem... however for me my depression that was there before all my other illnesses is worsened by it... But they have antidepressants to help with all I have... they even have me on a siesure med that curbs my mood from the explosions and mania... It also helps my Parkinsons and anxiety... Strange how so many meds of all kinds can help us...

I have finally been blessed with a good team of drs that work together... 6 of them... Each doing their job to try to help me in some corner of my illnesses... All agree with my treatment plans and all know what each other is doing... and all get along lol... I have one that I may have to change but she is a new one and we are trying to give her a chance... it is hard to be a newbie lol... But she has put off some pretty important things and it could have meant life or death to me... according to my cardiologist... so we will see where we go from here... the tests are all in and I have the plans to follow... so now I can talk to her and see about changing her...

Dr's are important to our being able to live with this... It is much easier to accept what is going on when you understand what is happening to you... and it is hard to be able to do that when your drs don't understand you...

I pray you will find the help you deserve very soon... and you will find the relief you need... but remember... the strength is in ourself to fight this... Acceptance is how I stay positive and strong... And accepting and loving myself is very important for my survival...

take care... love... Jan/Dakota

Thanks jan and I appreciate your story. I have been encourged by this website and God Bless You as you Deal with all your struggles.