I don't know if you wan't a response, but I know and feel your anger. I could have written what you wrote only you wrote it better. I was on narco for awhile and then the doctor stopped me cold and I couldn't get anything from anyone. I started using a TENS unit I had from a back injury years before. I don't know if you are familiar with a TENS or even want to be, but for some reason it helps me. The sad thing is that I hurt my back again so now I am back on Narco for my back instead of the fibro and the Narco has actually made the fibro much worse. Interesting. At any rate, you can get a TENS on Amazon.com that is pretty good. Mine is from a doctor that showed me how to use it, but it isn't that hard to figure out. Good luck. LaurieView Thread
I want to shout it from the roof tops because this has been a life saver for me. Medicines have never really done much for me, not even narcotics. I was given a TENS machine about 8 years ago when I hurt my back. I didn't need it anymore and had put it away. Then it occurred to me that just maybe it would help my fm. I went to a pain doctor and she sold me a new version and showed me how to hook it up on my back even though I ached from neck down to my knees. It helps so much. I wear it every day, all day. It is pretty inconvenient, but I don't care because it helps so much. Look it up on the internet for clarification. It does take a doctor's prescription. My insurance won't pay for mine ($440) but you can find them for much less on the internet that are just as good.View Thread
Ask your rheumotologist about a TENS. (Look up TENS on the internet) I swear it saved my life. I now have hurt my back and use it for both now. You need a prescription for it. Don't let your doctor talk you out of it. It was a pain doctor that got it for me. Good luck!View Thread
How do you really know if you have fibro? I was told I had fibro by a rheomotologist, who was from the Cleveland Clinic, in 1994 without the tenderpoints. Then again in 2009 with the tenderpoints by a different rheumotologist (who has since moved away). Then in 2013, I was in so much misery I went to a friend's rheumy who is in private practice and very well respected. The others were too. She was a real bitch to me, but did her physical and declared I did NOT have fibro. She did some extensive blood work and I came back for the results. She was nicer but said I certainly did NOT have fibro. I later had an appointment with a new primary care doctor and told her I had been told for years that I had fibro but was now told I didn't. She said that if this recent doctor said I didn't then I certainly did not.
The thing that bothers me is that I have ALL the symptoms of fibro and I feel I have the tender points but not "tender enough". I now feel guilty for belonging to this site and also telling people that I have fibro. It is an easy explanation when people ask what is wrong with me instead of saying "I don't know". Do any of you have a similar situation?View Thread
No I am not. Actually I wasn't at the time. I just went there because I had what was called "silicone poison". He then diagnosed me with fm. Neither of which were believed in this area at that time. Most doctors in the nation don't still don't believe in "silicone poison" but I definitely do. I wish I did live in an area like Cleveland! The place I live (population is over 100,000 and a University town) is pretty backwards.View Thread
I certainly appreciate your warm response. It is interesting that you tell people you have chronic pain/migraine pain and not fibromyalgia. I have felt over the years that if I mention "migraine" or "chronic pain" it is like saying "you have a bad back". People just roll their eyes. It is like it is over used. That is why saying fibromyalgia works better because it says so much in one word and is not over used. At least in my little part of the world. I am amazed at how many people are familiar with it. Probably due to all the drug advertising.
It is very interesting what you said about tender points. I agree with you totally about the amount of pressure and maybe it isn't exactly where the doctors says it should be therefore I am "wrong". When I get home I look on the internet and see the points and push and yelp. Some of the spots much more sensitive than others and some not at all.
You know, I really don't care because the name doesn't matter. I know how I feel and I am just going to say FM although as soon as I typed it I felt a big twinge of guilt in my gut! At any rate, I take Neurontin which helps and I wear a TENS which helps a whole lot. I take several herbs and vitamins and do mild exercising 3-4 days a week and that is the best I can do. There is no cure for FM or anything that is similar to it so it doesn't matter what I or my doctors call it.
So you and the other FMers have been very helpful to me and I appreciate your time. I just hope I can help in return!View Thread
Hi Nancy, thanks for your nice reply! I have bought the book that you talk about. I bought it on my e-reader and may have to buy it as an actual book but it was twice as expensive. (I am cheap) I keep finding passages that I want to highlight. I am afraid I haven't gotten very far because it is a bit "dry". With my memory what it is I keep wanting to remember all the muscle and nerve parts, which are fascinating, so I keep rereading everything and not getting very far.
I like what you said about asking yourself whether you have FM or CMP. It makes me feel better that I am not the only one that questions myself or the doctors.
I have started, several times, looking through the Members Toolbox. It took me several tries just to find the darn thing. It is amazing how much time you can spend reading on this site. Between an old back injury and body aches, it gets to be a bit much, but I don't want to stop!View Thread
I appreciate your response "missist". As far as getting hold of that last rheumotologis I would rather go get a beating. I thought I couldn't be treated any worse until I then went to a pain doctor a few months later and she was even worse. I was beginning to think I was going to stay with men doctors! I have not been to a nice, patient doctor in so long I really can't remember. We have 2 large clinics here and so I thought it was just the way the clinics were set up so that is why I went to the private doctor. She was grumpy too. Really, I am a very respectful, shy person so I don't think it is an "attitude" that I bring.
If I go out of town I run into the insurance problem of "out of network". So I am stuck.View Thread
I always get a "kick" out of reading your name because that is who I am to my grandchildren. Just had to add that.
Being told what I DO have has always been the problem and always being told what I don't have. Of course it is nice to know you don't have those bad things. I have been tested for Parkinson's and MS (even had the dreaded spine tap) for other "disorders" that I have but not had them identified either. So, the answer is that the most recent rheumy just told me that I had overactive nerve endings. What really makes me mad that she did not prescribe any kind of medicine at all. Not even cymbalta, Lyrica, Neurontin. I think I made her mad when I asked for hydrocodone.
She is a believer in Fibro and I think most of the doctors I have gone to for other things have never scoffed at me about that. None have ever offered to work with me either.
I have had my Vitamin D checked and it was low several years ago but has been very good for the last several.
I love this site and you ladies. I have being reading along for several years and jump in every once in awhile, but don't know how you know if someone responds to you within a thread if it isn't one you have started yourself. Does that question make sense?View Thread
Sometimes one of the big stumbling blocks of FM is depression. Depression can give you the feeling that it is just too much effort to leave the house. It is very common. Have you discussed this with your doctor? I really don't like it when a primary doctor treats for depression. A psychiatrist is much more qualified to do this. If depression is diagnosed there are some great antidepressants out there. You sound very social to me so ask for help and you will find it.View Thread