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eugene
Posted Monday, October 16, 2006 11:42 PM


 

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I am a 29 yr old male from Cinci Ohio.. Last october I was diagnosed with reiters syndrome after 9 months of suffering very strange symptoms.
after seeing 20 doctors on seperate visits to the hospital and being called crazy by every last one, I finally came across a doctor who suggested I had been suffering from an auto-immune disorder so he referred me to a rheumatologist.
after describing all of my symptoms to the rhuem he told me he suspected reiters syndrom (reactive arthritis)
it has now been a full year since my initial diagnosis...this past month I was back in his office with a new list of symptoms... he ran a physical exam on me and scratched his head then told me he was going to write a script for physical therapy on grounds that my reiters had spawned a new nasty...fibromyalgia... is it common for people with one rheumatic disorder to develop fibromyalgia or become more suseptible to developing this painful constant nagging condition?

I keep loaded up on plenty of flexaril
and combo it with physical therapy every other day, plus I take ativan as needed as I have very chronic panic attacks which I never had before I got sick with reiters syndrome.

this week has been hard since the weather is cold and rainy here so I am going through another flare up... this winter Im sure will pound me just like the last one did...
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Emmab2003
Posted Tuesday, October 17, 2006 12:00 AM


 

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I'm pretty sure you can get fibro from autoimmune things (would try researching Mary Shomon's book on autoimmune conditions. Thyroid trouble is what started mine in a worse way. Stress is a biggie too, and as a fellow sufferer of anxiety and panic, it just figures that the fibro flares go along with the anxiety and stress.
Hope you feel better and find what works for you (sounds like you have?).
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eugene
Posted Tuesday, October 24, 2006 6:16 PM


 

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Well the nasty flare has reared its head again. The worst thing of all about fibromyalgia is the depression... I get so tired of feeling sick more than I do well...
and Im tired of having to live off of flexeril and vicodin day in and day out
and what makes it worse is being called crazy by doctors (saying I have somatoform disorder)and being told that I need to see a head doctor because what Im suffering from doesnt really exist.. its all in my head.
so I have decided to write a song about it just to release some steam, you guys are more than welcome to listen to it
"Winter"
whatever!
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Lindalupus
Posted Wednesday, October 25, 2006 10:53 PM


 

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Eugene yes it is common to have an autoimmune disorder then get fibro.. I have Lupus, which was diagnosed first, then I was diagnosed with fibromyalgia. I feel for you, the winters are so harsh for people with any type of arthritis. Be thankful you have the meds you need. My docs will only give me chlorzoxazone and ultram, there are some days I just want to die because of the pain but the Doc's are so afraid of prescribing narcotics it's ridiculous. I wish I had a Dr. who would prescribe narcotics when I need them. I listened to your song...it was awesome! WOW! Loved it! Anyway I have learned to accept my disease, it is a part of me and while I don't feel better physically I do emotionally. It's all in the acceptance. Keep on keeping on Eugene!
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mikeyswife
Posted Wednesday, October 25, 2006 11:04 PM


 

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I've never heard of a male being diagnosed with fibro, and I worked for a doctor for years. But, there's a first time for everything...It's a (his words, not mine) label they give to hypochondriacs who have nothing wrong with them but insist that they have a medical problem.. Tired of vicodin and flexeril?? Suck it up, and be grateful for the good things you do have. Sorry I come off as harsh, but I have tendonitis, and I stand ALL day long, working as a barber. I also have arthritis in the spine, neck, and shoulders. Hurts like a motha!! I take the meds, and off I go. I suck it up. I don't let it get me down, PERIOD. I am the 42 year old mother of four daughters, and am happily married, so I focus on the beauty in my life, not the pain. Life is what you make it, gene.. Come on, life's too short to let a little pain get in the way. I also take Cymbalta. Maybe that would work for you as well. Ask the doc about it. It'll help any depression issues you sound like you may be dealing with as well. Good luck, and if I hurt your feelings, I apologize, that wasn't my intention.
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eugene
Posted Friday, October 27, 2006 9:51 PM


 

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Im not offended by your comments at all, your not the first person to tell me to "suck it up".. life is rude so I dont mind at all. I was first diagnosed with reiters syndrome which is a rheumatic disorder (reactive arthritis) that affects men. my rheumatologist says while fibromyalgia is suffered mainly by women 90% of the time that men also can develop it. My rheumatologist does not belive I am a hypochondriac but most ER doctors that are not fluent in the field of autoimmune disorders will automaticly assume its "somatoform" .. there is nothing wrong with my mental health as I was cleared from that by a psychologist who gave me a clean bill of mental health.. the pain I have is too great to just "suck it up" every ones pain tollerence is different from the next person so the "suck it up" just sounds like an idiotic thing to say from a medical standpoint.
In recent studies it has been proven that those with fibromyalgia have unusually high substance P in the cerebral spinal fluid that is connected to amplified pain and there is evidence of specific muscle groups that have undergone a dramatic change in metabolism which I was tested for and my test showed Just that so it has been proven medically that I am not "Imagining" my pain.
I hope one day that people can become more educated about fibromyalgia before they make assumptions. Thank you for your support Linda I have been doing better on the emotion end of things as I am finally coming to terms that this is what I am stuck with, as far as the depression it has to do with my cognitive decline, I feel disorented and my short term memory has really taken a beating here and there. Im glad to have found that there are other people out there dealing with what I have. The problem of why it is no one hears about men suffering from fibromyalgia is because to date it's been though of as a womans diesease. Too many men have too much pride to say hey I have a diesease that mainly affects women...or the doctors will completely dismiss the possibility because they think it's a womans diesease but it's not.

by the way here is a page you can read up on.. it's about men with fibomyalgia written by Lisa Lorden on the National fibromyalgia association website : http://www.fmaware.org/patient/coping/men.htm

also another great site for men with fibromyalgia to visit is http://www.menwithfibro.com
another website you men on here should visit is at: http://www.merlinean.com
this site chronicles one man's stuggle with fibromyalgia -

P.S If you do not have fibromyalgia and lack at least a remedial knowledge of the diesease please do not comment in my thread.
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JackieQ
Posted Friday, April 27, 2007 5:36 PM


 

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Mikey'sWife,

Way to go chump. Now THAT's how to show some compassion. Why don't you just give Eugene a gun while your at it?
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Eunice20
Posted Saturday, April 28, 2007 8:27 AM


 

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eugene, I don't care if you are a man or a woman fibromyalgia is very miss understood either way. Some days are alot better than others & people often expect you to do as much & act the same every day. I'm sorry to read that people have told you to "suck it up" & others have thought you need mental health care. My Dr. recommended some counseling to help me learn new ways to relax & deal with other stress so I hopefully won't have so many flares.
I know from years of personal experience that weather plays a part in the pain but also how much I do do when I feel good affects me. I often overdo on days I feel good & pay for it the next five days. Mental stress also affects fibro. Last fall there was an unexpected death in my family & my dad's parkinson's rapidly progressed. I have had alot of flairs since then.
It is now spring & we have had some wonderfully warm days. My work takes me in & out of building so yesterday I walked between the buildings instead of driving. Today I hurt alot. I didn't sleep well last night because I hurt & I am up an hour early because I couldn't get comfortable. I don't have to work today so I will rest alot. I don't get much housework done this way but thankfully I have a fairly understanding husband who does alot to keep the house clean. I still feel like a failure some day though.Some days I handle all this well & others I don't.
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Michelle343
Posted Saturday, April 28, 2007 5:32 PM


 

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Mikeyswife,
Eugene was reaching out for compassion and advice and what do you do.... act like people out there without autoimmmunes and minimize his pain.
How could you?
To Eugene, I dont know how someone like Mikeywife,someone with pain and inflamation, can tell someone else with pain and suffering to "suck it up" and then say their intentions werent to be rude! When I start threads on here I cant wait to read what wonderful and respectful replies I will get from people (men or women) who understand and live with the same pain and suffering I do! None of us can compare our pain to someone elses pain! Also, you dont need to explain or justify to anyone that you have been tested for FM and actually do have it. If you say it - WE BELEIVE YOU! Dont let anyone ever make you feel like you DONT have something or feel something that you know you have. I am sorry that someone was so rude to you and hope you know that we are a sisterhood and brotherhood of autoimmune disease sufferers and you should feel free to vent like the rest of us! By the way, I have PsA, FM, IBS, Hyptohyroid, Venous insufficiency etc etc etc and YES, it is common to develope more than one autoimmune disease. Good luck to you Eugene and I hope you start to feel better soon. You know when something is wrong and dont let anybody try to tell you different. Keep on looking for the help you need. Peace and Blessings, Michelle
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Emmab2003
Posted Saturday, April 28, 2007 11:11 PM


 

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Umm, for the record, men definitely do get fibro. We have had several show up to our support group and I think they only left because they were a little outnumbered by girl talk.
You take good care Eugene, and we are pleased to be able to talk to you and have you with us here.
I also agree that this place is a wonderful place for support and helpful replies.
Hope to see you posting more here, and I'm sure others do too.
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cathy7
Posted Monday, May 21, 2007 1:35 PM


 

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HAS ANYONE HAD A VACCINE BEFORE THEIR DIAGNOSIS? VACCINES ARE THE CAUSE OF 80% OF ARTHRITIS SYMPTOMS.
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Bikegirl
Posted Monday, May 21, 2007 5:03 PM


 

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Can anyone tell me about "fibro-fog"? I keep hearing this term used and not sure what it means. Been Dx w/FM since August last year.
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Robin4
Posted Wednesday, June 13, 2007 10:05 PM


 

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Ah, the wonderful world of fibro-fog, where your brain completely stops working and time slows down so that you feel as if you're hiking through molasses. It's usually associated with a fibro-flare, when the symptoms get noticeably worse, usually stress induced.

I've been on the guaifenesis protocol for nearly three years now, and I was doing much better, until the world basically fell apart all at once. Family medical emergencies, house re-org so mother-in-law can move in (a lovely, sweet lady, but a little more notice would have been nice), no time to exercise, and, presto, huge fibro flare. Did I mention the part about not being able to make any decisions?

I think the most important part of fibro-fog is recognizing when you're in it and not trying to make any life-or-death decisions. Actually, probably all you'll be able to do is crawl into bed and cower under the covers anyhow. The other important thing to know is that it passes. Exercise is key. Even if it's just walking around the house over and over again. Yoga is also up there at the top of the list. You might try looking up information about "restorative yoga." It's great when you have almost no energy whatsoever.

So, doesn't this sound like something really fun to look forward to? Sorry about your diagnosis. On the other hand, when I was first diagnosed, it took ten years just to get a diagnosis in the first place and even then most people still didn't believe in it.

Just remember: don't panic. It will pass. Very, very slowly.

r
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Valery4
Posted Friday, July 20, 2007 12:28 PM


 

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Fibro can be a result of any type of trama to the body. Many people find it starts after an auto accident. For me, I think I had it even as a teen. And fibro fog is soooooooooo real. Mine is worse because I also have chemo brain. Had I known chemo KILLS brain cells perhaps I would have chosen less toxic type. But too late now. And yes men do get fibro. Why should only us women be so lucky. When the rehummy told me I had it I felt such relief. I knew I did, I researched my symptoms. All she did was check the tender spots, I have all 18, lucky me. But she diagnosed me and said come back in a month. Did nothing else, so after one more visit I stopped going to her. Since they now feel fibro is a nerve disorder, pain receptors fireing off, I see a neurologist. When I flared really bad she gave me an RX for, oh nuts I can't think of the name, give me a moment. Ah yes, steroids. Short time, a month on with weaning off. It did help some, but you can't just stay on steroids. Funny thing, when I was getting chemo for breast cancer, the fibro pain VANISHED. Completely for the 6 months on chemo and for about 4 months after. I didn't even realize it until after and the pain returned. I looked it up and it seems others have had the same thing. But you surely can't stay on that stuff. Being bald is not bad for awhile but I wouldn't want it forever. Although it was easier to get ready to go out, no hair to get all done up. But about fibro fog. One of the problems I had at work was the cognative problems. When I had to go for evaluation at a shrink for the gov't for disability it was really embarrasing. He's asking all these questions, some math (easy math) and my head just would not work. I felt so dumb. When I got home I looked things up on the PC just so it would not nag at me. I can still read a book sometimes though. Thankfully since I love to read. But I won't remember it at all. I have read so many books the past few years but please, don't ask for a book report.........I am sure I had this in my teens and that is why school was very hard for me. My head had to work extra hard back then also. And at 55 that's a long time ago. Part of what bothers me the most is the "skin pain". To just feel so much pain at the slightest touch, my skin feels like it's on fire. I can still remember the first time I had this. I am sorry Eugene you are having such a hard time. I can't even imaging what it would be like for my husband to suffer from fibro. He does everything around here. Very often he even does the grocery shopping. I get so exhausted and forget so much. He is a wonderful man and I am so blessed. He just finished redoing our kitchen, all by himself. And boy does it look great. He did stuff to make it easier for me. I am only 5' and it's hard for me to work at counter height. He put in this great drawer, it's wide and the front drops down. It gives me a lower work surface. That makes prep easier on my arms and back. Well enough of me, this is about you. Eugene you take care of yourself and no major decision during a mental flare.
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