2danes
11-13-2008, 01:02 AM
I just joined this group to some imput from others who suffer the same as I do. After14 long years i have just been diagnosed. I have been through a range of medications , all knds of tests, trigger point injections and an epidural to name a few. I am very frustrated because my neuro sent me to see a pain management dr. yesterday. I get in the office and go through the entire story to find out he does not treat FMS because HE does not believe it is a REAL disorder. I feel like I am going in circles. I trying to get as much info as a possibly can as to which type of dr. I should see. I live in GA, northwest of Atlanta. I am willing to do whatever it takes to get help. I am tired of getting the run around and many doctors thinking its all in your head. I am schedule for the 5th MRI and a nerve conduction study. I am getting very depressed at this whole situation. I know I am not the only one with the same problem and I am not trying to complain to anyone. I am at a total loss and do not know where to turn. I cannot afford to keep going from dr. to dr. without any help. Thanks to all for any help you can provide!!!!:confused:
Sponsor
sgtyogi
11-13-2008, 01:54 AM
I can only speak on this in that my wife has had Fibro for several years and we went through many of the same things, running from doctor to doctor, there is nothing wrong, its all in your head. We finally got some results when she was sent to a Pain Managment Clinic. While there she asked them which doctors would they see who has an understanding of Fibro. Perhaps you have a Pain Management Center/Clinic in your area that receives patients from your area from a specific doctor who at least has an understanding of what you are going through. I personally am very impressed with the resources and large number of helpful ppl here. I hope this at least gives you some direction. As I mentioned I have only gone through this with wife and at times wish that I could take on half of what she is going through. Please don't be discouraged but continue to seek out help, easy for me to say, but the family suffers as well watching a spouse, and mother go through this. I hope that I have at least given you something you can use.
kim840
11-13-2008, 11:52 AM
:(I'm sorry you are going through all that you are. Keep going. I have found that by asking over the phone if a doc is "fibro friendly" has netted me results. No use wasting anyone's time if they are not. You might try that when calling around to see where to turn to next. I agree that a pain management clinic might be the next step.
I send you gentle hugs and will keep you in my prayers for finding a compassionate and educated treatment. :angel:
I send you gentle hugs and will keep you in my prayers for finding a compassionate and educated treatment. :angel:
rosebuddy
11-13-2008, 06:31 PM
OK you need to find a doc.
search.
If not for my pain mgmt doc i don't know what i would have done. So keep trying.
The MRI will rule out MS.
I am almost symptom free, but it took over 3 years of all kinds of treatments mostly by my pain mgmt doc. She has a brochure about her practice and the first thing on the list of what she treats is fibromyalgia and the second is chronic myofascial pain.
Who did your trigger point injections?
I am also on percocet and ultram as needed and take 20 mg of flexeril at bedtime. and i take neurontin for burning skin.
The only time i have symptoms is when a cold front is moving in. I get all achey and tired like the flu and just lay around.
I am on disability but started feeling so much better i got a part time job. I sure would hate to work full time but i like this.
I know a whole lot of people that it has taken a long time to get diagnosed and treated. I was diagnosed by 2 docs on the same day. saw a rheumy that sucked. and a pain mgmt doc that thought i was crazy. but my neuro sent me to a pain mgmt doc and just love her. I don't know what i would have done without her. so don't give up. And try not to get upset or stressed about appointments because it will make you flare worse. What i did was draw a picture of a person and colored in each of the painful areas with different colors and had a key for burning skin, shooting pain, muscle pain, numbness and tingling, etc. I handed it to my doc and she put me on a treatment plan that has changed my life. I didn't have to say a word.
Sometimes we get too emotional and it really turns doc's off. they think that we are crazy. I know i worked for doctors for 12 years. and they hate it when you bring a list. but bring in a list of the 3 most important things and go from there. that way you won't worry about what to say or that you will forget something.
I hope i helped. keep posting and let us know how it goes.
also i highly recommend Devin Starlanyl's books. I thought i was losing my mind til i read them. there is fibromyalgia and chronic myofascial pain it has the most information. and the other one is the the fibromyalgia advocate. it helped me get disability.
search.
If not for my pain mgmt doc i don't know what i would have done. So keep trying.
The MRI will rule out MS.
I am almost symptom free, but it took over 3 years of all kinds of treatments mostly by my pain mgmt doc. She has a brochure about her practice and the first thing on the list of what she treats is fibromyalgia and the second is chronic myofascial pain.
Who did your trigger point injections?
I am also on percocet and ultram as needed and take 20 mg of flexeril at bedtime. and i take neurontin for burning skin.
The only time i have symptoms is when a cold front is moving in. I get all achey and tired like the flu and just lay around.
I am on disability but started feeling so much better i got a part time job. I sure would hate to work full time but i like this.
I know a whole lot of people that it has taken a long time to get diagnosed and treated. I was diagnosed by 2 docs on the same day. saw a rheumy that sucked. and a pain mgmt doc that thought i was crazy. but my neuro sent me to a pain mgmt doc and just love her. I don't know what i would have done without her. so don't give up. And try not to get upset or stressed about appointments because it will make you flare worse. What i did was draw a picture of a person and colored in each of the painful areas with different colors and had a key for burning skin, shooting pain, muscle pain, numbness and tingling, etc. I handed it to my doc and she put me on a treatment plan that has changed my life. I didn't have to say a word.
Sometimes we get too emotional and it really turns doc's off. they think that we are crazy. I know i worked for doctors for 12 years. and they hate it when you bring a list. but bring in a list of the 3 most important things and go from there. that way you won't worry about what to say or that you will forget something.
I hope i helped. keep posting and let us know how it goes.
also i highly recommend Devin Starlanyl's books. I thought i was losing my mind til i read them. there is fibromyalgia and chronic myofascial pain it has the most information. and the other one is the the fibromyalgia advocate. it helped me get disability.
rosebuddy
11-13-2008, 06:38 PM
Have you tried the Fibromyalgia & Fatigue Center of Atlanta? It might be worth a try.
rosebuddy
11-13-2008, 06:46 PM
John Gatell, Atlanta might be worth a try.
Search.
good luck
Search.
good luck
SD83
11-13-2008, 07:02 PM
Rosebuddy has provided some very good information here. The only thing that I would add is that you do indeed have to be very careful in what you say to doctors. I've been explaining my symptoms to doctors in very fine detail, and it has gotten me nowhere. I wish I had a clear-cut strategy for doctor-speak, but I haven't found one yet. 5 different doctors and 0 answers for me so far.
Not to typecast, but with the size of Atlanta, I think you may have better luck in finding someone who is fibro friendly. I would take Rosebuddy up on the recommendation and see what follows from there. You have my very best wishes! Don't let your depression rule you -- remind it who the master of your own body is.
A doctor can be the key to your struggle, but in my journey, I've found that a lot of the best healing comes from within, from the self. Stay pure of heart and clear of mind, the doors will soon open for you.
Not to typecast, but with the size of Atlanta, I think you may have better luck in finding someone who is fibro friendly. I would take Rosebuddy up on the recommendation and see what follows from there. You have my very best wishes! Don't let your depression rule you -- remind it who the master of your own body is.
A doctor can be the key to your struggle, but in my journey, I've found that a lot of the best healing comes from within, from the self. Stay pure of heart and clear of mind, the doors will soon open for you.
2danes
11-22-2008, 02:20 AM
I had my trigger points done by a well respected pain clinic. I also saw a pain management dr. who I was referred to by my neuro, but this pain doc does not belive fibro is a true condition and does not treat it. What a wate of time and money. To top it off I was to have an MRI done today and the diagnostic center waited untiil the last minute to get approval from my insurance company and of course it was not approved in time for me to get it!!! How does the neurotin affect you. I was prescribed it by my PCP , but have been afraid to take it because it is an anti pyschotic. Do you happen to know any docs in the Atlanta area you might reccommend. I am currently on a doctor search. Thanks for you help.
rosebuddy
11-23-2008, 12:47 AM
my pain mgmt doctor gave me my trp injections herself. Her brochure stated that she treated fibromyalgia. I would get up and walk out of any office where a doc didn't believe in it. Don't take it personal. Just move on.
Neurontin is used to treat peripheral neuropathy and I think it is an anti seizure med. I use it for burning skin sensation. I can't drive when i take it. I haven't had to take it for a long time.
I found the docs by doing a search.
I suggest that you control your healthcare and be your own advocate. Do not be at the mercy of doctors. Learn as much as you can. And when stuff happens and you can't have your mri. shake it off. It's not that big of a deal. You can have it later. It is just to rule out MS probably.
I hope you feel better soon. I am so grateful for my docs. Don't give up. keep trying till you find the right ones.
Neurontin is used to treat peripheral neuropathy and I think it is an anti seizure med. I use it for burning skin sensation. I can't drive when i take it. I haven't had to take it for a long time.
I found the docs by doing a search.
I suggest that you control your healthcare and be your own advocate. Do not be at the mercy of doctors. Learn as much as you can. And when stuff happens and you can't have your mri. shake it off. It's not that big of a deal. You can have it later. It is just to rule out MS probably.
I hope you feel better soon. I am so grateful for my docs. Don't give up. keep trying till you find the right ones.
1sunny1
11-23-2008, 01:17 PM
Todanes, take the neurontin, it is prescribed for fibromyalgia. I took it and it did not give me any side affects, but after a while I was switched to Lyrica when it got approved for FMS. Both meds do wonders, at least for me it did. It did take the burning out of my feet and the hurt out of my arms and other areas. I believe Lyrica is a wonder med. I did gain weight and am currently trying to control my weight, but I would rather have the weight than the pain. Please at least give neurontin a try, if it does bad things to you, than quit. From what I have read here on the boards, some people have a loopy feeling or something like that, but I have not read about any real bad side affects. Keep looking for a pain management doc that believes in FMS. It took me 13 years and too many meds to count in finding the right doc. I wouldn't trade my pain management doc for the world and she gives me trigger point injections as well. Please keep trying...
Sunny
Sunny