Are you male or female?

Drummer76

Member
Joined
Apr 15, 2018
Messages
29
Reason
DX FIBRO
Diagnosis
02/2006
Country
US
State
IN
curious to see how many men and women are here with FM.
I'm male in my 40s diagnosed in 2006
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
156
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Hello - I am female in my early 50's diagnosed in January. Trying to cope with this without prescription meds!
 

Eff2013

Member
Joined
Jun 25, 2020
Messages
27
Reason
Undiagnosed
Diagnosis
00/0000
Country
AU
Hi, I m female in my mid 50's and not formally diagnosed yet but have had many of the symptoms for guite a few years now. Not Happy 😫
 

Drummer76

Member
Joined
Apr 15, 2018
Messages
29
Reason
DX FIBRO
Diagnosis
02/2006
Country
US
State
IN
Have you been to a specialist that knows about FM? They are hard to come by but I know of 2 where I live that were very knowledgeable and offered good advice to me.
 

Drummer76

Member
Joined
Apr 15, 2018
Messages
29
Reason
DX FIBRO
Diagnosis
02/2006
Country
US
State
IN
Hello - I am female in my early 50's diagnosed in January. Trying to cope with this without prescription meds!
I am on some but none that are made for fibromyalgia. I have xanaflex I use and on meds for depression and anxiety. The depression and anxiety has been hard to deal with.
If you can tolerate the meds I would go for it. Leaving it untreated actually makes it worse from what I have been reading lately.
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
156
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
I have seen a neurologist and she was the one that diagnosed me, then she moved to another State. I am in a holding pattern of tired of doctors etc right now. I spent 2 years at appts and having alot of tests etc. Right now just living my life dealing with this each day with whatever it throws at me. Doing alot of research and hoping to find something that will work to put this thing in some kind of remission.
 

Drummer76

Member
Joined
Apr 15, 2018
Messages
29
Reason
DX FIBRO
Diagnosis
02/2006
Country
US
State
IN
I have seen a neurologist and she was the one that diagnosed me, then she moved to another State. I am in a holding pattern of tired of doctors etc right now. I spent 2 years at appts and having alot of tests etc. Right now just living my life dealing with this each day with whatever it throws at me. Doing alot of research and hoping to find something that will work to put this thing in some kind of remission.
I know how that feels. Overwhelming. I was seeing all kinds of doctors and I just stopped going. I was so overwhelmed and stressed over it. I was already diagnosed and tried several medications that were making me sick. What I done was printed off a bunch of web pages with symptoms that related to what I had and took them to my doctors and got diagnosed that way. They weren't listening and I knew what it was and that was the only thing that got me diagnosed quicker.
Good luck to you and hopefully you get some treatment soon. It can be hard to get some doctors to go along with a FM diagnosis since they can run all the test and make money. That's how the health care system here works at least.
I also seen doctors in a different city to get confirmation. Only 1 Dr noticed that I had a non displaced fracture at T12 as well. I think it was a Nuevo dr who discovered it.
 
Last edited:

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
156
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
I know how that feels. Overwhelming. I was seeing all kinds of doctors and I just stopped going. I was so overwhelmed and stressed over it. I was already diagnosed and tried several medications that were making me sick. What I done was printed off a bunch of web pages with symptoms that related to what I had and took them to my doctors and got diagnosed that way. They weren't listening and I knew what it was and that was the only thing that got me diagnosed quicker.
Good luck to you and hopefully you get some treatment soon. It can be hard to get some doctors to go along with a FM diagnosis since they can run all the test and make money. That's how the health care system here works at least.
I also seen doctors in a different city to get confirmation. Only 1 Dr noticed that I had a non displaced fracture at T12 as well. I think it was a Nuevo dr who discovered it.
Yes my neurologist found i have compressed nerve roots in my neck and back. Recommended massage therapy for it but I have to get this pain under much better control before I can try that.
 

mrsk0403

Active member
Joined
Jul 25, 2020
Messages
30
Reason
DX FIBRO
Diagnosis
02/2019
Country
US
Hello,
I was reading through your thread and though i'd offer up my experience.. hoping it may give some insight. I was only diagnosed in Feb. of 2019, so am still new to this. I was EXTREMELY lucky and found a great Rheumatologist right off the bat to help me with the FM. I had gone to a PCP who referred me to a Rheumatologist.. and I am SO happy I saw her. I realize a lot of people prefer to go without medications and most people don't have the luck that I had with finding a Dr who I like and trust.. but I saw that you'd been seeing a Neurologist and wondered if you had ever tried a Rheumatologist. Again, I also completely understand not wanting to invite medication into your life. I, on the other hand, needed some kind of management with some extra help due to other conditions such as Depression and Anxiety. Finding a good Dr. can be one of the hardest things and not wanting to go back to Dr's after not having success is 100% understandable. There are good supplements that have helped people with FM as well. I know that I myself take D3, B12 and Magnesium and have found them all to be useful. I wouldn't say they take away FM pain, but I found them to be beneficial in other ways. I also take epsom salt baths and find those to be very helpful on bad days. I have also gone to Physical Therapy for the pain as well and found that to be very, very helpful. I hope this was at least helpful to read :)

K.
 

Drummer76

Member
Joined
Apr 15, 2018
Messages
29
Reason
DX FIBRO
Diagnosis
02/2006
Country
US
State
IN
Hello,
I was reading through your thread and though i'd offer up my experience.. hoping it may give some insight. I was only diagnosed in Feb. of 2019, so am still new to this. I was EXTREMELY lucky and found a great Rheumatologist right off the bat to help me with the FM. I had gone to a PCP who referred me to a Rheumatologist.. and I am SO happy I saw her. I realize a lot of people prefer to go without medications and most people don't have the luck that I had with finding a Dr who I like and trust.. but I saw that you'd been seeing a Neurologist and wondered if you had ever tried a Rheumatologist. Again, I also completely understand not wanting to invite medication into your life. I, on the other hand, needed some kind of management with some extra help due to other conditions such as Depression and Anxiety. Finding a good Dr. can be one of the hardest things and not wanting to go back to Dr's after not having success is 100% understandable. There are good supplements that have helped people with FM as well. I know that I myself take D3, B12 and Magnesium and have found them all to be useful. I wouldn't say they take away FM pain, but I found them to be beneficial in other ways. I also take epsom salt baths and find those to be very helpful on bad days. I have also gone to Physical Therapy for the pain as well and found that to be very, very helpful. I hope this was at least helpful to read :)

K.
I seen several Neuro doctors but I also had the best Rheumatologist in town after I was diagnosed.
I have tried several different things and have had no luck with relief and recently read an article that with people who have left FM untreated are harder to treat. Pain meds are a big no for me. I got way to addicted to them and it caused me so many problems. I have refused pain meds from doctors and just deal with the pain. That's the problem with pain meds or most medications,the longer you are in them,the more you need to make them work the same, hence why i got so addicted to pain medication back a few years ago.
 

mrsk0403

Active member
Joined
Jul 25, 2020
Messages
30
Reason
DX FIBRO
Diagnosis
02/2019
Country
US
It's so tricky! I started off on gabapentin and more and more medications were added and eventually it was like.. i'm on too many medications now and i'm still struggling, this is crazy. So now i'm on Cymbalta and off all gabapentin. It's been the most successful for me so far. I do have Tramadol I take as needed and that's been ok. I haven't felt any addictive qualities from taking that as needed, but I also understand it's different for everyone. Something that has worked for me won't necessarily work for someone else. I also do not have daily pain, it comes and goes. So I consider myself fortunate.
 

Drummer76

Member
Joined
Apr 15, 2018
Messages
29
Reason
DX FIBRO
Diagnosis
02/2006
Country
US
State
IN
It's so tricky! I started off on gabapentin and more and more medications were added and eventually it was like.. i'm on too many medications now and i'm still struggling, this is crazy. So now i'm on Cymbalta and off all gabapentin. It's been the most successful for me so far. I do have Tramadol I take as needed and that's been ok. I haven't felt any addictive qualities from taking that as needed, but I also understand it's different for everyone. Something that has worked for me won't necessarily work for someone else. I also do not have daily pain, it comes and goes. So I consider myself fortunate.
I used to be that way, not in pain everyday,but after 14 years,it's come to that.
I've tried both of those meds and I slept on the bathroom floor those nights. I felt like I was being treated like a guinea pig at times with all the meds they had me trying and I finally said,look,nothing is helping me and only making me sick. I'm done with those meds. I have Zanaflex that does help with muscle spasms since I get them pretty bad my anti depressant and anxiety and bp meds I still take
 

mrsk0403

Active member
Joined
Jul 25, 2020
Messages
30
Reason
DX FIBRO
Diagnosis
02/2019
Country
US
That's so interesting. I always assume that the FM will get worse with my age. I was only diagnosed in the beginning of 2019 and turned 31 in 2020, so I know there is more to come. My mother also suffers from FM and has since I was in late high school years. Her's is MUCH MUCH worse than mine and she takes pain meds and has daily pain and a general "not good" feeling most days. It hurts my heart to see it, but it's also scary knowing that that could very well be me when i'm her age. It all just seems to be trial and error, which is SO frustrating and takes forever. I take an additional Anti Depressant and anxiety medication as needed as well. I feel like I have a pharmacy in my dresser drawer. Lots of old medications that can be taken as needed... they just sit there, I don't even use them. I also now take more supplements than I ever have; b12, D3, magnesium, probiotic and fiber supplement. I've found these all to help a little with different symptoms, but still.. there is nothing that just makes it all go away. Have you ever tried Epsom Salt baths for the pain? That's helped me.. especially if you do light stretching while in the bath. Not everyone likes baths though.
K.
 

Drummer76

Member
Joined
Apr 15, 2018
Messages
29
Reason
DX FIBRO
Diagnosis
02/2006
Country
US
State
IN
Yeah I have tried them. Don't really help anymore then a hot shower does. There are days i feel like I could crawl put of my skin I'm hurting so badly then I have days I hurt but can deal with the pain.
I had a drawer full of unused meds I dropped off in a drop box. Heck some were 5 years old lol
It's sad that people will see us on a good day and accuse us of faking it and they don't see us on our bad days. I've even been accused of being drunk or on drugs,which i don't do either of.
That brings me to the whole marijuana thing. I'll admit I have experimented with marijuana and I will tell you this much. Hands down it was the best thing that helped me in 14 years of dealing with this. My blood pressure was lower,to the point I stopped taking the medication, I was taking less klonopin,maybe 1 a day instead of 3. My pain level was low,I was sleeping and eating like a normal person and then I came down extremely sick from using it after about 3 months.
I couldn't eat,I was sweating profusely just laying in bed wasn't eating. I was 100% disappointed that it made me sick but I think it made me sick because I was always smoking it even when not needed. I guess thats where my addictive personality kicks in. It's not legal where I live,but if it was,I don't think I would hesitate giving it another try and being more careful with it.
I was told by my last pain Dr that if it ever gets legalized for medical use,she would suggest me using it with as low of a thc contect as possible. She was very well versed with fibromyalgia and I liked her,but she kept trying to push pills and yoga classes on me and the clinic forced patients to see their therapist for "pain" which they didn't do anything differently then any other therapist i have seen in the past. The other thing I didn't like about the marijuana was the being high part. I don't like bring out of my own somewhat state of mind like that. I don't like drinking alcohol either. I hate the buzz effect. But if they could somehow extract the correct things out of marijuana that helped and didn't have the high,I'd be all in. CBD oil isn't anywhere near the same. I've tried several different kinds.
 

mrsk0403

Active member
Joined
Jul 25, 2020
Messages
30
Reason
DX FIBRO
Diagnosis
02/2019
Country
US
That's very interesting to hear your experience with Marijuana. I've heard great things, but of course everything effect everyone differently. I know my mom who has had Fibro for many years finds a lot of help with CBD gummies. I'm not sure of how different it would be vs. the oil, but I've heard good things. I have tried both and find both helpful, but again it's just different for each body. It's all trial and error which is so difficult. I agree that its sad that some people see us on a good vs. bad days.. it's so true. Some understand and some don't.. and some don't even try to understand at all. I've seen that a lot with my mother who when she was diagnosed with FM, it was not big and Doctors knew very little about it. Everyone thought she was being lazy or was uninterested all the time. I knew there was more to it and understand now more than ever.. but it's hard. Even family members who cared about her judged her for not participating in family events because she was "too tired" or "hurting". I read up on what it was about and always read the articles she gave me so I could educate myself and be informed but some people just don't (and wont ever) understand it.
 
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