I'm here to tell you all, I care and you're not alone. I haven't found any meds. that take the pain away but to try and reduce my stress and use heat has been of the most help. My heart goes out to each of you.. :-)
24 Sep 2012
The ones of us who feel cheated by having to endure FMS, it's ok to feel that way. We have a right to feel sorrow for ourselves inspite of "it could be worse". The worst could be worse.
I try and tell people it's like having a flu but viruses go away and don't come back usually for years but we know when we have bouts, they will come back anytime and soon. There's a big difference there!!!
I don't like to feel sorry for myself or think negitively because it does me no good but when I do feel bad and can't get outside or function, I think of all the people who are bedridden and then I'm thankful I can get out of bed and do have some good days. And it's especially comforting but unfortunately so, to know there are others who know what we are feeling and we are not alone..
I wish there was a 24 hr. support phone number for those of us who (need) to talk when we are feeling so awful and can't get on the computer to do so because we don't have the energy and/or hurt too bad. We have one another and we always will. The group may change but there is always someone.
I wanted to add one thing before I sign off, I bought a lightweight electric blanket and find it to be the most soothing when nothing else works. The heat all over my body just makes me go, "ahhhhhh"...
I wish for all of you to remember, there's always someone who understands and we are far from being alone!! We are blessed with each other and that's a wonderful thing..
Gentle hugs, Janet
22 Sep 2012
Hi slamina, I too have fibromyalgia & totally agree with you about pain meds not helping the pain of fibro. I have to take pain meds for many other conditions I have, but have found that none of them help with fibro pain. It seems it's something that you just have to learn to deal with, & get educated on what really does help, such as exercise, & diet. I know when I'm really achey, & that couch looks so inviting, I have to just pass it by & start moving those muscles & keep busy. Stretching like with yoga seems to work well, & also warm water exercising. I was on Lyrica at one point, but it gave me high blood pressure, & also about 25 pounds of water weight. So many of the drugs used to try to help fibro have so many side effects they are just not worth it. Again, education is the key, There are so many great web sites to read about the whole fibro thing, & tools to deal with it. Thank you for your post, & know we care too...
7 Jul 2013
Dear slamina, on top of Crohns disease for 28ys+, 2 herniated discs, a brain tumor, and several other minor, but, problematic things I was diagnosed w/Fibro about 2 yrs ago. I am so frustrated. !st thing pain dr tried was Lyrica. in 4-5 days my face & lips were swollen huge and I had to stop it. I was changed to Neurontin 300mg 3 times a day for over a year. As I complained more of pain cause it just wasnt helping, they upped me to 4 a day. I was "diagnosed" with no tests, blood work, x-rays, etc. For me, I feel like Fibro was used as a dumping ground for unexplained, undiagnosed pain. I need someone who understands because I don't. Any input will be helpful.
24 Sep 2012
Hi slamina, you are right, we have to keep together, because nobody can really understand what a person is going through unless they actually go through it themselves. Isn't that just the definition of humans though? Glad to have you aboard, and I look forward to hearing from you again soon!!
21 Sep 2012
There are meds that take the pain away, you get them injected while you're in the hospital, usually by knocking yeou out or making you so spaced out you don't know your name. And that is short-term, as they are designed to help us manage. Anyway, you hit it on the head as the best medicine us understanding, especially form fellow sufferers, so thank you for your and all the.
21 Sep 2012
Hi slamina, I've fibro as well, and I have actually found Neurontin to be quite helpful with the pain. I also take 2 20mgs of oxycodone daily, and that helps as well.
I hope you can find something that helps the pain because our lives are so limited without pain control.
Thank you for your post,
24 Sep 2012
You have lifted my spirits. Some days I wonder why do I have to endure this. And of course there are people who have worse situations. I feel for them but it does not make my pain go away or change my situation.
I take gabapentin for several symptoms including fibromyalgia. I was diagnosed with it about a year after my car accident and I was very surprised to find out I have it. Thank You again
21 Sep 2012
I have had fibro most of my life. I've tried more things than I can count. Nothing completely takes the pain away. I had good results with Lyrica, but I had too many cognitive side effects with it. Neurontin helps some. So does tramadol, but mostly its attitude. You just can't let it get you down.
17 Dec 2012
Thank you for starting this comment thread, slamina. One of the best treatments for fibromyalgia is stress relief, and the best treatment for relieving stress is to vent to people who know what you are going through. Also, helping others feel better emotionally improves one's own self esteem, and I've found that self esteem is hard to hold onto when you feel like you can't do ANYTHING!
As well as having fibro, I also have arthritis in my knees, back, and neck, herniated discs at C5 and C6, and L4 and L5... I also have sleep apnea, adult onset asthma, and of course, depression from having all these issues. I have never, in the 29 years I've had fibromyalgia, been able to find any treatment that really truly works to reduce the pain in my muscles, other than sleeping (being unconscious).
Actually, there is ONE other thing which would help... and should help most fibro sufferers... moving to a very dry and hot climate, with as little rain as possible. Unfortunately, my fiance and I are not in the financial position to move to Arizona like we want to. The climate in Arizona is PERFECT for fibro, as humidity and cold weather are MURDER for most of us! So, if you have the means to move there, or to another area similar in weather, go for it! It would be the best thing you could do for your pain and sanity... plus Arizona is gorgeous!
23 Sep 2012
I'm adding to my own post as I'm new to this and the responding so I hope you all get this.
I was glad to see so many of you connect. That's what we need," alittle help from our friends."
I live in Iowa and today it's cold.windy and damp and I woke up feeling awful and nothing has seemed to help. I'm trying to learn to sell on Ebay and I found out today my 1st item sold was sent in error so I got angry with the fibro. fog and my inability to focus. But then I had to let go and accept it and know that it's not all that terrible and I'll have better days.
I think we may be too hard on ourselves and frustrated because.. darn it.. noone understands if they don't have it. So education is the key!!! and I hope more is said to the public to make it easier on us.
Not having to defend or explain ourselves is a stress reliever and we all know the stress is a major trigger. I also have a chronic stutter from a childhood injury and I was told by another person with a stutter, a heart surgeon professor, "If stuttering is going to color my life. then I'm using the brightest colors I can". The same goes with fibo. pain and fog. Let's paint it bright because we need to. The dark is too dreary.
I'm so happy to have heard from you all and I am thinking about you and praying for a discovery to ease FMS...
Gently hugs, Janet
18 May 2013
Guneapig, "being unconscious" made me laugh so hard. Doesn't give us much life. Methedone helped me but I stopped it due to an elongated QT interval CAUSED by the Rx. Get an EKG folks, you'd be surprised how many Rxs cause this. Damn medical profession. Look up Lyrica and it's cute (NOT!) little side affects. Matter a fact look up ALL meds you may be taking at Drug.com. plus get an EKG. I'm grumpy today. Sorry.
22 Sep 2012
What a beautiful thing. To actually write in and try to comfort us. That's just precious in itself. God Bless You. You have a wonderful and caring heart. I have fibromyalgia, and it's very painful and hard to live with. Unfortunately, I too haven't found anything to help it either. And a True Friend who understands sounds pretty good to me. When are you available?? lol. Well, hon, my heart reaches out to you too. And may you be blessed many times over for you're kind words and support to the people who have Fibromyalgia. Your Friend, Ruthie
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