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my experience
4 Replies
raef90 - January 1

I spent 5 years in the Navy being ridiculed and belittled for saying I was in extreme pain. I would suffer through 20 hour work days and unending work weeks in the submarine community and when I would complain to the boat corpsman he would tell me to suck it up, even when I broke my L2 in my lower back, in fact, he wouldn't even examine my back and take me off the work rotation, so I had to continue working through a broken back until we got back into port 1 month later! When I got back, most of the doctors I interacted with treated me like a delinquent trying to get out of having to do my chores, and finally 1 doctor from Madigan Army Hospital said I simply need a full assessment of my health, told me and gave it to me in writing that I am not fit to go back out to sea and my boat corpsman just ripped it up and ignored my pain.

3 years later now, I found out that I had broken my back, that I have severe and worsening scoleosis in my Thorasic portion of the spine which was never there when I was younger (even though the doctor's are trying to tell me I was born with it... but I had x-rays when I was younger and never a comment on my spine before 2005), FM, and many unidentified aches and pains that I can't even get a doctor to look at or pay attention to because of the FM, and even worse, because "men don't get FM" mentality that I find in every doctor. When I had my disability claim with the Navy the doctor that I got my physical said that to my face. It was everything I could do to hold back from laying into him...

Aside from that, I do have a question of others here, I have an incredibly high pain tolerance, although I can't take my chronic pain, I can take incredible punishment. Am I alone in the community for being able to take impossible amounts of pain, whether it's from a deep tissue massage therapist wrenching into my muscles as deep as they can go while I don't bat an eyelash, or sparring in martial arts and taking a kick that's like a battering ram to the chest and bouncing back to continue fighting without flinching? I just want to know, because at least in my interactions, most of us do have a very high pain threshold for external pain, just that we feel pain all day every day, not that we're more sensitive to pain...

I mostly ask this because especially in Washington, when I go in for a massage, and I ask for a therapist that can go as deep as possible to give me some relief from my pain, I get someone that can barely accomplish swedish, which leaves me in more pain than when I went in because they didn't go deep, they only teased the muscles rather than drilled them...


I posted this in response to someone else's post in the support groups section, but I'd like some feedback. I'm a 25 year old male that "looks" like I'm in top shape and perfectly healthy, even highly athletic... but I'm very disabled and it gets extremely hard and painful. It's very debilitating to try to get help or to just live my life at the normal man's 100% when I have to work 10 times harder to attain that. I'm working my hardest to get through the pain in probably one of the worst environments for me to live in (Seattle, Washington). I am going to the University of Washington and am working on getting into graduate school in Archaeology and becoming a writer.

 

Anne Hillebrand - November 7

Hi, raef90

Sounds like you have FMS pretty bad. Have you tested your saliva pH.

Very inexpensive and easy to do. Just takes a minute.

90% of those I have helped have the Overly Acidic Version of FMS.

Human saliva is supposed to be 7.4

Yours either is, or it's not. Very important to find out.

Anne

FibroFix

 

Fantod - November 8

Hello - I read your post with a growing sense of disbelief and frustration. While it is true that men are far less likely to have fibro (about 20%) they do get it. You need to see a rheumotologist for a firm diagnosis. Go to the National Fibromyalgia Association website and ask them for a referral to a fibro-friendly doctor in your area. You probably have benefits through the VA but I, for one, would encourage you to go outside the system for this. As for pain tolerance, you sound like Superman to me. I think some people are born with a mental toughness that will carry them through any fire storm. I also think anyone who has FMS learns to cope with the pain to some degree. You appear to be better than most with it. All of us have been forced to deal with our pain and discomfort on some level in order to maintain some quality of life. I applaud you for trying to stay fit, get an education and keep going in face of such adversity. Get yourself to a rheumotologist - if you have any Xrays or an MRI relating to your back problems take them with you. That is certainly contributing to your overall discomfort. I would also ask the rheumotologist for a referral to a pain specialist. They should collaborate to find the best options for treating your FMS and the back problems. Take care.

 

raef90 - November 10

I haven't gotten my saliva pH tested. Is that something I can test on my own or do I need to ask my doctor about this? I also haven't been able to find out any information on Overly Acidic Version of FM, perhaps you could point me in the right direction so I can read up on the differences?

Thank you Fantod. I do have a diagnosis, and I am currently being cared for and paid by the Veteran Affairs for my disabilities. Doesn't mean it isn't still a pain in my butt dealing with someone that would rather not deal with me because they are used to dealing with 60-80 year olds, not disabled 25 year olds. I just simply don't have enough money to go outside of the VA health care system, since I can barely afford 2 massages a month on top of my tuition, housing and everything else I have to do.

If there are options that I can pursue, I will definitely see what I can do. Since I live in Seattle, I can't imagine there aren't plenty of specialists around, it's just a matter of how do I pay for it or get the VA to pay for it. I'm tired of being in as much pain as I am, but I'm even more tired of it being acceptable to the VA. They basically just seem to want to make sure I'm alive, but could care less about my well being. Especially since it's 'invisible' so to say.

As far as what I do get from the care providers at the VA is basically that I need to stay active and stretch. I can tell you that myself, but there has got to be more to it than that because we are all still dealing with this. I've been advised to get massage therapy, chiropractic care and acupuncture, 2-4 times a month each, and that is way outside my budget. What I want to know is what I can do that I can afford to do, I'm a student and I quite frankly can't really work because of the pain, and the fact that I'm not willing to put up with the extra pain that I have to endure for a pay check anymore. I spent enough time doing that in the military when I would be on my feet and working long and hard, some weeks over 80-90 hours easily. No overtime pay, no benefits, just discipline if I refused, no matter how painful it was. Shy of a 6 figure income, I'm not going to do that for anyone ever again (unless it's for myself, then it'd be ok)

 

toots2889 - November 10

Im sorry. I know what your going through. Im 40 and for about 10 yrs or more my dr wouldnt listen to me and kept saying it was something viral. It wasnt until I switched drs. that I found some relief. I just found this sight and found it very informational. I have a bulging disc at c4&5, l5, which is also torn, degerative disc disease, and know they found small tumors. I to have fm, bursitis in my left hip, and dont do well with pain. Im on vicodine as needed, Lyrica, amitryptalene, zoloft,and topamax for migraines.I dont feel like the lyrica has helped, and Im in pain all the time but suffer alot as Ive already been accused of being a junky by family. I have 2 boys in sports, and its hard to keep up with them, but yet I dont want to miss anything! When I am down like today where I hurt so bad and have no pain meds, I feel like the worst mother in the world. My husband and I are seperated, so its all up to me. When I have my vicadin, I have more energy, and less pain. I can do it, but how do you know if thats a bad sign! I dont want to be an addict. When do you draw the line. I too am sick of the way people make me feel. They look at me funny when i get my drugs. Im ready to lose my home because ss is fighting me. Ive had to give up 3 jobs already because of this. Im just glad I found this sight to talk to you all and get feedback and understanding from someone who knows. Hope I didnt ramble to much-just really fustrated.

 

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