Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I have just been diagnosed with fibromyalgia after months of pain, stiffness, swelling, debilatating fatigue. I have been tested for rheumatiod arthritis (this is still up in the air) and lupus (negative ana test). I was diagnosed with fibro by a rhumatologist. His reccomendation to me was to sleep more, stress less and "break the cycle" of beating my body up. That's it. He told me I could follow up with him "as needed" but he didnt feel it was neccessary. No scripts, no further recomendations, nothing. I am so upset...so this doesnt get any better, there is nothing to do for me?? Hell, RA and lupus may damage the body, but I almost wish I was diagnosed with one of them, at least then they could try medication to help me feel better and try to stop the disease process. I feel so lost...I have to hurt every day?? I work full time, my income plus my husbands barely pays the bills right now, I have 2 small children...when and I supposed to sleep? and stress less?? Does that exist??? I dont have anyone to help me, my mom works full time, my husbands mom works, there is no one here for me. No one understands how badly I hurt, I am crying right now because sitting in this chair on the computer is killing my hips...nothing I can take to make me feel better...I have taken an SSRI for years. I feel so lost and alone. I feel like I am an awful mother to my children because i cant just take them to the park, or run and play with them, it hurts to bad. This is affecting EVERYTHING!! How do you cope..I am struggling!
Anyway, there are so many of us that understand what you are going through. Part of the problem with fibro is finding a good doctor. Sometimes it may be an RA, other times it may be a PCP or a Pain Mgt doctor, etc. I did not care for the RA doctor's that I saw because they were very similar to what you experienced...all about the sleep. So I went to my PCP, whom I've known for 23 years as our family doctor, and asked him if he would treat me for fibro. So you have a dx now, you can choose your own doctor to treat you.
I feel for you having small children and working! My goodness, that's a lot. My kids are grown up (pretty much)...25, 22, 19, 15. I was working full time in a job I really liked until fibro and CFS got the better of me and my doctor insisted that I go out on work disability.
There are lots of things that can help your symptoms...medical, natural products, therapy; as well as things to do at home such as a hot bath with epsom salt, gentle stretches, etc. That's why I'm asking you to repost this in the other Group page, because you will benefit from so many more people than just me :) There is also a group call The Fibro Puzzle, where most of us documented our story...how we got this, what we've taken to help and other info. If you want to look this over, click on the last tab across the top "Groups", and then just look for The Fibro Puzzle.
Gentle hugs and prayer for you. I look forward to reading your posts :)
So sorry about your pain and frustration! Though it's been a bit slow today, there are a lot of people here that can relate to your whole story. I hope you get to feeling better soon!
In the mean time try gentle streching, heat/lce, and if you use things like ibprofen, tylenol etc, just dont use too much.
And btw, most of the time the first step is getting you better sleep. He should not have just told you to sleep better, you need to get on something to give you deeper sleep, be it natural or prescription.
Gentle hugs and a sympathetic shoulder to lean on coming your way ..........
Big gentle hugs sent to you.
I as well am sorry for your diagnosis and the lack of the Doctor to really help. I'm new on here and this is a great group of people. I'm sure your planning on seeing another Doctor and that's the best place to start. From what I'm learning on my own and here, there are many treatments out there to help. Not all, of course, work for each individual.
Good luck and I look forward to hearing your progress.
I'm very sorry you're going through this, and especially that the medical profession is so dismissive of your pain.
A couple of thoughts that have really changed my life:
First of all, there's a very good chance that some of your pain is what's known as myofascial pain where the muscles get knots in them that refer pain elsewhere. It goes hand-in-hand with fibro but most doctors do little more than note it in your chart leaving you to suffer needlessly. Fortunately, myofascial pain can be controlled with trigger point massage, and you can easily learn to do it to yourself if you're willing to endure some pain as the trigger points [the knots in the muscles] can be extremely painful to touch.
I use the book featured at triggerpointbook.com along with an electric percussion wand massager. I've gone from being in one degree of pain or another 24/7 for years on end to being relatively painfree about 85% of the time. I can be a lot of work, but I have a very low pain tolerance so it's been worth the effort.
Another great site dealing with myofascial pain is triggerpoints.net. They have the most extensive trigger point and referred pain diagrams online I've found.
I was on various meds for a number of years and kept getting sicker and sicker and sicker and sicker to the point I was almost bedridden, and would have had to perk up to die. I was forced to go off them when I noticed I was developing a receding hairline from a couple of them. It freaked me out so badly that I just couldn't bring myself to take them and strangely enough, I started feeling better. I also had been forced to clean up my diet at the time as I discovered I have a lot of food allergies. I didn't realize the impact the meds had on me until I went back on klonopin for this crazy sleep disorder where I twitch and flop around just as I'm dozing off. Within 3 days, I was beyond depressed and sick as a dog again. The sleep disorder is annoying but it sure beats being morbidly depressed and sick as a dog so I went off it and got feeling better again. I guess my point is that I never once considered the fact that Imight actually be experiencing side-effects that were making me sicker. Google your meds and see if fatigue, muscle pain, anxiety and depression aren't among the side-effects.
Here are a couple of wonderful article articles by Dr. Rodger Murphree, a chiropractor who treats fibro and CFS using orthomolecular medicine that involves giving the body the nutrients, supplements and what that it needs. He views fibro as CFS as a low-grade system failure where various systems malfunction but not to a degree that grabs the attention of a doctor. Since implementing parts of his protocol, cleaning up my diet and going off meds, I've been in remission for 3.5 years now.
http://www.drmurphreestore.com/newsletters_letters/healthnews3_21_07.html
http://www.drrodger.com/brainfunc.html
This is a matrix showing the signs and symptoms of low adrenal and low thyroid function that are very common in fibro:
http://www.drrind.com/therapies/metabolic-symptoms-matrix
A great place to buy supplements online is vitacost.com. They have a pharmacuetical grade housebrand called NSI that is very reasonably priced, and we've done very well on. They sell most major brands at a decent discount as well, along with $4.99 shipping for any size order.
lita
I agree with the advice that if you can find a doc that will work with you to find what helps.
I had to get a new doc when I moved. I went to the only doc that was accepting new patients and he said "I don't believe in fibro". I said "then you won't be able to help me" and left. One of the other docs took pity on me and took me on. He has been great. No I am not cured but it sure helps to have a doc on my side. Don't give up it can be managed not well but managed none the less. Hang in there at least you know what you are fighting now. My best advice is adjust, adjust, adjust. Most of us seem to have been A+ type personalities so I had to let go of letting people eat off of my floor. lol I managed to play with the kids with stuff on the floor where I could lay down. Games, dolls, legos etc. You will figure it out. You will find so much help and support here I hope you will keep coming back. Ask all the questions you can think of. It gives us something useful to do.
Gentle hugs
So sorry about the diagnosis, and the pain....we do understand just how much this affects your whole world....There are lots of things to try to help manage symptoms....It takes a bit of time to find what works for you....
My story is on The Fibro Puzzle, as well as what I do to help keep my fibro under control (most of the time)....It is important to try to get the best sleep you can (my doc says 8-9 hrs a night)....I benefited alot from "From Fatigued to Fantastic", a book by Jacob Tietelbaum....a great source of info on fibro, and some tips for helping with energy, diet, etc......
Something that helps my pain alot is easy swimming in a heated pool at the local Y....if you have one nearby, maybe try that.....just walking in the water feels awesome....
Again, welcome to the group, and sending you big HUGS from down south :)
Don't give up hope. It does take time to find the right combo of drugs, therapies, etc., but there's a lot to try. Just come rant to us, we all know how it is!
Hugs,
Leo