Odd Looks when you are a Male with RA

Booboo711 is Refusing to Give up Living With It Male Aircraft Mechanic and Reliability Analyst Living with RA Aircraft Mechanic who enjoys being around Aviation and now works as a... Send Message Subscribe: Booboo711

Thursday, February 26, 2009
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So as you sit there with that look of shock on your face in the Rheumatologist Office the question hits you, "What Now?" You spend hours searching the internet trying to find support groups and find it nearly impossible to find one with any males. Then you have the funny and often odd ...

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RA and Guys
bucko27
Thursday, February 26, 2009 at 09:01 PM

BooBoo - Just wanted you to know that you aren't the only guy with RA. There are lots of us out there. And as you are finding out, there is a lot of misinformation out there too. You have faith and your loving family which should be enough to keep you going. hang in there and I hope you can get control of your RA with the right meds. It takes a little time so don't get discouraged. Hang in there pal!

steve

re: RA and Guys
Booboo711
Friday, February 27, 2009 at 11:31 AM

Just wanted to say Thank you for your kind words. I know it is not a easy road but as I know from my years and issues of before and how far I have come, "Faith makes things Possible, Not Easy!"

Again thank you. I go back to the Rheumy in a few weeks and we are going to decide together which Med we both agree would help my condition. I will add you to my prayers along with all of us who this is our cross we must bear.

Woot! another mechanic!
SophieBlue
Friday, February 27, 2009 at 12:06 PM

Hey, BooBoo! I'm not a guy but I used to work on KC-135s. I was specialized, we did PDM and I was the one who disassemebled and reassembled the left horizontal stabilizer. Wonderful days.

My problem was my wrists--my hands didn't really get red and swollen unless (like right now) I had a bout with my palindromic rheumatism, which can be a real joy killer for about 3 hours at its peak. It got to where using a torque gun was just murder, the clutch would kick in, the gun would jerk my wrist, and I'd be ready to roll on the floor in agony.

I only have mild to moderate RA and now have a totally different job with a different company, where my RA only gets in the way when the handicapped bathroom is locked. (Anybody in there? Hello?) Lot less money, but I have a job.

Hang in there, buddy!

re: Woot! another mechanic!
Booboo711
Friday, February 27, 2009 at 10:50 PM

So glad to hear from another aircraft mechanic! I am glad that I went on to the Reliability field now I get to still be around airplanes and smell jet fuel.... oh what a smell and also get to play with math..Love it.

Guys with RA
Ellen
Friday, February 27, 2009 at 01:19 PM

Hi Booboo - No,you're not the only guy with RA!   When my husband and I got married at age 24, our best man was his best friend (26) who had RA (and of course still does now, 33 years later!) AND, they didn't have the newer meds that they have now. When I was diagnosed a few years ago, the first person I wanted to talk to, and who was the most helpful, was Pete, and he has been a survivor in many ways - he gave me his take on all the different meds he'd been on at one time or another (like, most of them!) and what helped and what he had trouble with. Everyone is different, but his advice mostly turned out to be just what I needed. Before I found this group, he was about the only one who understood what it's like, even though my husband is great, very capable around the house, as well as at work, and seems to be able to fill in wherever I can't.

     As far as meds for me, I was already taking Celebrex when I was diagnosed. Because I had high liver enzymes, my doctor skipped over all the methotrexate and regular DMARDS and went right to Remicade. I was not enthusiastic about that (SCARED to death), and I didn't react well, but eventually we settled on Enbrel and it has worked well for me for about 4 years running - still on it. I don't have any trouble giving myself a shot (only the first time, when I freaked out, totally unexpectedly, afterward...but then couldn't wait to do it again 3 days later, because I sensed it was HELPING) and I'm glad not to have to go for the Remicade IVs. Pete, on the other hand, prefers Remicade, although while at one job, his insurance forced him to switch to Enbrel. That worked ok, but for him it's more convenient to go to his dr. for the IV. For me (Dr is 70 miles away), just the opposite. Live and let live!

     It is wonderful that you have a supportive spouse, and your faith. I have found that mine has become if anything stronger, and that even at the low times, though it can be rough, it is doable...Best of luck!

Ellen

57 years old, married for 33 1/3 years (my husband is a recording engineer and record collector, hence I'm emphasing 33 1/3 - joke!) next week!

talking about RA........
melanie
Saturday, February 28, 2009 at 03:36 AM

hi booboo, i'm melanie. i understand your feelings. i'm a lady with a man's disease. i have spondylosis, not ankylosing - yet. i was embarrased awhile back, i ordered tickets to see matchbox twenty and i was taking my daughter who is 17. well, i asked for seating in the area for people with mobility problems. they gave me handicapped tickets, BTW - thTHEY ARE WAY CHEAPER THAN REGULAR PRICED TICKETS!! well, my daughter had to sit in the handicapped area with me and i really was embarassed for her. i look too normal, but i can't go up or down steps. i'm one of those people that doesn't look a bit sick. but let me tell you, my hips - the sacroiliac joints in the back, not the hip joints, just kill me. i had the right side injected yesterday. it's a daily struggle with RA. and it's scary, no one knows how to plan for the future. i never thought i'd have to be worried about being disabled, but i am worried. i'm glad we all have this site to talk to each other. write us all again, us ladies will give you good advice!! good luck to you - melanie

Untitled Comment
Lene Andersen
Monday, March 02, 2009 at 12:40 PM

Thank you so much for posting. Since more women than men do tend to get this disease, this site does get a little estrogen-heavy and I think it's terrific that you're giving us the story from the other gender, as well. Looking forward to seeing your next post!

Son With Rare Form Of Rheumatoid Arthritis
Bestema
Monday, March 02, 2009 at 10:47 PM

My son has had a rare form of rheumotoid arthritis since he was 18 yrs old, and he is now 21. He has Dermamyatitis which affects only 1 to 5 in 10,000 a year. He is in denial now that this is what he has because his rheumotologist he had for 3 yrs won't see him anymore because he lost his insurance and he owes him money which the insurance was suppose to pay, and this doctor has done some wrong things in his treatments. The really sad thing is that he is 6-3 and only 135 pounds and he has no friends just his two brothers that he hangs out with, and has never had a girlfriend. He is not doing so good now and I found a site online that will accept people with no insurance and pay for a doctor for them to see. Is there anyone out there that knows how my son can meet people his own age? He is a good-looking man, and very considerate of other peoples feelings and needs, and he never complains about his pain. Thanks for listening. Kathy

re: Son With Rare Form Of Rheumatoid Arthritis
smirfkin
Sunday, July 19, 2009 at 07:25 PM

Check out the Buckle Me Up Movement. It's a new movement designed specifically for those of us with RA who are young. www.bucklemeupmovement.com Also look on here for Lene Andersen's posts. She is a great resource for finding help when it seems like there isn't any. She also has a blog at http://theseatedview.blogspot.com.

~Kristen~

24 year old with RA for 7+ years

Guys, you are welcome here!
JB
Wednesday, March 04, 2009 at 12:51 PM

Booboo711, Steve and all the other guys lurking about on the site, welcome!

My name is Joy and I am the manager for the site. Booboo711, thanks for sharing your story. I know I'm not the only one who wants to see more from you.

You'll find that the people in this community are extremely helpful and can help answer any questions you have (or just listen when you need to vent).

I encourage more males in our community to post, comment and answer questions. The mo' voices the mo' better! Thanks again

re: Guys, you are welcome here!
andrew
Friday, May 01, 2009 at 02:57 PM

This is the best, most positive forum I've found the RA! And I'm so glad to see other guys like me "lurking" around.

Untitled Comment
Fast Car Steve
Monday, May 04, 2009 at 10:49 PM




Hey Booboo,

I'm 44 and been in great health all my life, in some 20 years of work I have only had 3 sick days. Then to start having pains in my hands, wrists, elbows and shoulders and not knowing what it is can be troubling.

I have a small business refinishing bumpers on people’s car where often times you have to get down low to the ground and now that the inflammation has moved to my knees, ankles and feet, this can be quite the challenge.

I must agree, having a wife that is very supportive has made this a lot easier to deal with.

It is sad when you have close friends who call you a "faker", they just don't get it and that can be hard because we expect our friends to be there in times of need.

The most frustrating part of this disease is, I have 2 boys, a 2 year old and a 5 year old, and not to be able to play with them without getting hurt is hard. I wish I could give them more of me.

Hang in there Booboo and all you others with RA.

Untitled Comment
ManwithRA
Friday, June 12, 2009 at 11:56 AM

You definitely are not the only guy w/ RA. I have had it since I was 27 - and was misdiagnosed for 3 years as a Lupus case. I was in remission for many years with Plaquinil and Ibuprofin, but eventually that started wearing off and now have been in active flare-ups for about 5 years. I am easily the youngest and only male when I visit the Rheumatologist - but hey, the nurses flirt with me so not all that bad!

Humira and Enbrel didn't work and now am trying Orencia with a Methotrexate chaser.

As far as co-workers or others noticing when my hands are swollen, or my RA moved to my hip and I can't walk, or my jaw and can't chew - I just brush it off as no big deal or joke that I got into a fight in the parkinglot. I have told a few people who I work with tho - those with similar symptoms to me but haven't gone to the doctor yet. I have helped 2 people get diagnosed that I work with and they are in remission now.

Good luck to you

Untitled Comment
BadRaZoR
Saturday, June 13, 2009 at 01:13 PM

Hi, my name is Frank and I was playing semi-pro baseball as a pitcher when ankylosing spondlitis hit me at age 23. Needless to say, it ended my baseball career. I'm 41 now and still have it. Any time I injure a joint, like a elbow or knee or finger, then the arthritis goes there and ruins that area forever. So far, my right knee, right wrist, right shoulder, left elbow and left shoulder have all been affected so far. I've been on Feldene for about 13 years and that helps a little but the Enbrel helps the most. Unlike some of you guys, I have zero support from my wife who thinks it's all in my head and i could be cured with exercise.

I just wanted to post along with these other fine people to let you know there are many of us out there!

re: Untitled Comment
Midwest Modification
Monday, July 06, 2009 at 11:05 PM

Hi Frank....I am a 54 yr. old woman with RA. I have 2 sons(ages 20 and 23) who think that all I need to do is exercise and that will be the cure-all. They just don't get it, that the fatigue is real as well. It is unfortunate that you don't have a supportive wife. I thought it was bad because I am out in the dating world , and hoping "strangers" would be understanding...lol. We have got to laugh to keep our sanity I guess.

I was wondering if anyone out there knows of any publication that is geared toward "the family" of someone with RA...etc...listing the emotional as well as the physical detriment we face. I was hoping it would alleviate some of the misconceptions our loved ones seem to have, and explain we are trying to deal with this disease as best as we can, that these feelings are real and justified.

Good Luck Frank, and everyone. I enjoy hearing others comments. I am on celebrex, methotrexate(and folic acid) , ultram, and a Humira injection every other week. I also use Tylenol occasionally. I have lost 3 inches in height already and take Actenol as well. I LOVE the HUMIRA as it really helps the fatigue.

My husband
Diane
Monday, June 29, 2009 at 04:15 PM

My husband got RA when he was 16 years old and he is now 50. It can effect anyone.

I love when you use a handicap sticker at a store or anywhere else and people look like well your to young to be using one of those. He has had both knees replaced and his shoulder replaced 2 months ago. He had to have a reverse shoulder replacement because the rotator cuff was no longer their.

I wish you all the luck and God Bless You because what I see in my husband it is a very painful andf progessive disease.

He is now taking Enbrel shots and that seems to be helping more than anything.

Diane

re: My husband
Midwest Modification
Monday, July 06, 2009 at 11:14 PM

Hi...I actually had an older man come up to me and repremand me. He said it was "people like me" that......etc.....AND "what was I teaching my son".( My teenage son was with me at the time and was mortified to be parking in the "spot" to begin with.) He went on and on and on....Thankfully I taught my son a lot more manners than that man had, and he just kept quiet. I started to explain....I also have asthma....and...AND the guy just raged on. I turned and left thinking I hope he doesn't have a poor wife that has to put up with him all the time....LOL. What a brut!

re: re: My husband
Booboo711
Sunday, July 19, 2009 at 07:34 PM

I get the same looks when using mine since I am 32. I had the placard before I was diagnosed with RA since it is from a injury in the Military. I notice if I drive my truck with my DAV plates I don't hear a word. Hard to be a Disabled Vet at 32 and have people say stupid things without wanting to clean their clock. At least I know that is the case for me.

RA
exobg
Saturday, August 08, 2009 at 02:12 PM

To all fellow sufferers, male or female, our common bond of pain and joint destruction is not one to ever wish on anyone else. My diagnosis was just established after only 3 months of severe pain in my hands. Had much lesser pain for quite a few years, with a sudden worsening this spring. Fortunately I got an early referral to a rheumatologist who did the appropriate tests, including x-rays that pretty much showed destruction of the 1st joint in my right 2nd finger along with other changes. Started with methotrexate which brought some minimal relief, and have just begun Enbrel. I am a retired OB-GYN doc, and loss of full use of my hands is really hard to accept. I am encouraged by other posts to this site, and hope to achieve good results from the treatment. Best wishes to all for your own long-term benefits and disease control. Don't forget to support arthritis research so we, and others to come, will be assured of the best possible prognosis. Cheers to all!

I know how how you feel !
becca860
Monday, August 24, 2009 at 04:46 AM

I used to also think that only women got RA. In my family,four of my aunts lived their lives in wheelchairs by age 40. I also have cousins(girls) that suffer from this terrible and very misunderstood disease. Even with this family history in my chart, it took seven different doctors two years to finally diagnose me. I heard every other diagnosis in the book....depression, Menopause, weight problem, marriage problems,fibromyalgia, stress, blah ... blah....blah... My older brother had to have both knees and a hip replacement by the time he was 50..they told him he had osteoarthritis. so many people just look startled when they see me walking with a cane. They always ask "what happened to you?". when i tell them that i have RA , they just blow it off and say " oh yeah, my grandma has that". I am 50 years old and although I am a grandma, I certainly dont think i resemble the "granddma" they are talking about. very little understanding, or compassion which is very frustrating, because most people with RA that i have met, had previously been hardworking, overachievers who took on stress and problems like they were par for the course. so when suddenly, this strong , take charge personality, changes to one that is slower, more needful of help, feeling overwhelmed and ashamed . people just dont understand, they just want you to take an aspirin and get over it....I have tried all the drugs out there. Been diagnosed for about six years now. I can no longer work, because the drugs, while slowing down the damage to my bones, make me have stomach problems, nausea, extreme fatigue, growth of tumors (3) in one year. One has been surgically removed and was not cancer, but two others are in kidneys and are inoperable. I quit taking these auto immune suppressants after 3 years of fear, operations, many cat scans and MRI's.and although i do feel better relief from most of the other symptoms, my bones have become more damaged and it is very hard to do much of anything anymore. what hurts me the most is not being able to hold and play with my grandchildren. My advice to anyone out there diagnosed with RA, is to educate yourself about these drugs and their side effects first. sit don and show family members information about your disease and the possible side effects of the meds. share with them that just because you don't "look" sick" you are. accept your bodies limitations and take care of it in every way you can... exercise and stretch every day if you can, and don't be afraid or ashamed to say "I can't".. love yourself and that love will flow right through to others!

re: I know how how you feel !
Vicki / FL
Saturday, October 03, 2009 at 05:22 AM

I can identify with everything most of you have said. I too was an over acheiver, athelete, camp counselor, and what I loved most about life was anything outdoors. I have lost my marriage, my business, a social life, and pleasure in everything I loved to do in life including being a wedding singer. The medications have made my stomach bleed and the side effects are intolerable. I have just moved back in with my mother (I am 45). I love my family, but that is utterly humiliating, I have always been self sufficient. I have men wanting to date me, but I hesitate because I don't want to have to explain when I flake out because I am too sick to follow through with plans. Besides all the painful joints, the fevers, chills, swollen glands, headaches, and TMJ (to name a few) are all bad in and of themselves. What worked for me a few years ago was an antibiotic protocol. It took 6 months or so to start to see results and the 'die off' effects were terrible, but it kept me fairly well for about a year until my body quit tolerating the antibiotics. Then I had to deal with the flares and issues from side effects. Methotrexate made me very Ill as did plaquenil (sp?). I Can't take anything for pain, not even a Tylenol without ulcer issues. The heavy hitters are my next option. I know someone younger than me who dropped dead three day's after starting the IV with one of the meds. Side effects scare me too much. I got by for a long tme on steroids, but can't do that any more. With that being said, I am of the belief that this is a bacterial infection or multiple bacterial infections. I am now on a series of detox meds through a naturepath Doctor. I have a lot more faith in him than I do the pill pushers, we shall see if it works, it's about a 6 month process.

The doctors are a whole other story. The few rheumatologists I've seen are disrespectful and rude. They have a God complex that is difficult to deal with, they absolutely do NOT listen. I wonder how one can get disability for this disease. I imagine only after we are obviously crippled like my father and grandmother before her passing (in her 50's due to heart complications of RA). I'm usually an encouraging person, I try not to wear this illness for anyone to see. I hope it's OK that I had a temporary melt down and gripe-fest in here. I'm simply lost right now, like you, my life has been turned upside down! Thank you for your words of encouragement. Vicki / FL

To the OB/GYN Physician
Vicki / FL
Saturday, October 03, 2009 at 05:39 AM

I went back and read all the posts, my apologies to you if I was offensive in my remarks about my rheumatologists. I do not generalize and put all Doctors in that catagory, just the two I have had to work with. You seem very encouraging and I bet you were a great doctor. To have done what you did for a living and then losing use of your hands, I am sure you grieve every day over your loss. To the others who have lost use of joints that were needed to effectively perform your work duties, my thoughts are with you. Being female, I understand women are fairly 'security oriented'. To watch a husband (such as the baseball player or mechanic) suddenly not be able to do what he used to do is difficult. Our spouses (my former spouse) cannot really comprehend the level of pain we suffer. When joints are so huge that it's obvious, then they might have some compassion, but we have to keep in mind, their lives have been changed dramatically as well. They are as scared or frustrated as we are. My point is, you have to find an outlet somewhere, someone to talk to who can help you cope with your frustrations. We need to be careful not to take it out on our closest loved ones. Most peole want to fix things when someone they care for has an issue. They cannot fix this, nor can they even comprehend what it is like. This seems like a good outlet to share whatever it is you are feeling. Like I just did. I feel better all ready. Tee hee! vickijava

Living with RA
GreenBean
Wednesday, October 14, 2009 at 04:44 PM

It's great to hear from everyone and their similar struggles with RA. I am a 38 year old male that was diagnosed in 2007. I was very sick on MTX during 2008, contract pneumonia and had to have emergency surgery in January of 2009. I am now managing my RA with Enbrel and it seems to be working quite well. I can't even imagine what people that have RA did back in the 1950s, 60s, etc. I am so grateful for modern medicine. Each day is a struggle but its nice to hear that we are not alone. I have 3 young children under 6 years old and trying to remain an active, hands on dad has its challenges. Keep up the good work.