A Social Network for Men with Fibromyalgia, Chronic Fatigue or Pain
mary's Discussions
Savella
4 Replies
I was sent the following link by my support group leader and thought I would pass it on in case it is useful to anyone.Group Urges recall of drug for fibromyalgia…Continue
Started this discussion. Last reply by Randall Jan 29, 2010.
Men and Support Groups
8 Replies
I think this website is such a great idea seeing as fibromyalgia is often considered to effect more women than men. That clearly effects the of experience men with the illness. As a woman with…Continue
Started this discussion. Last reply by Randall Dec 3, 2009.
http://www.patientslikeme.com/
3 Replies
http://www.patientslikeme.com/Just want to mention a site I came across to day. I haven't had much time to look at it. I would encourage others to check…Continue
Started this discussion. Last reply by mary Nov 14, 2009.
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mary replied to Randall's discussion Do you have dry mouth?"I have a very dry mouth which is not surprising considering some of my meds. However, I have recently been learning about the effects of breathing through the mouth instead of the nose and I suspect it is a large part of my problem as well. Anyone…"
mary replied to Randall's discussion electronic therapy at a chiropractor's office"Years ago I had a chiropractor use a muscle stimulator on me. I found it helpful for reducing pain in that spot and relaxing the muscle. I have wanted to use one again but have a hard time finding doctors that use them or the money to afford it when…"
mary replied to Reverend Kurt fondriest's discussion a meeting time for the healing point philosophical awareness in the group The Healing point"I would have been interested but I haven't had as much chance to use the computer lately, and therefore totally missed it. Besides being extra sick and having scary breathing problems, I have also been at my sister's a lot to help her out.…"
Randall replied to mary's discussion Savella"I've not taken savella yet. If ur blood pressure has gone up siginificantly since taking savella, it's probably wise to discontinue. If ur BP has not gone up, u may be 1 of the 80%, & whether one continues it, may depend on whether u…"
Joel replied to mary's discussion Savella"Thanks Mary, I'm taking the med right now and just last week was going over the case studies with the dr. Both of us thought the outcome of the studies was not promising, but have decided to stay with it for now. I have seen no difference in…"
mary posted a discussionSavella
I was sent the following link by my support group leader and thought I would pass it on in case it is useful to anyone.Group Urges recall of drug for fibromyalgiahttp://www.chron.com/disp/story.mpl/ap/business/6825989.html See More
mary commented on Reverend Kurt fondriest's group The Healing point"Needless to say, I didn't get on here for the chat yesterday. The bummer is that I could have, but I completely forgot about it until late last night. Brainfog strikes again! I hope you had a good discussion"
mary commented on Reverend Kurt fondriest's group The Healing point"If my brain is working correctly that will be 2:00pm EST. I will try to get on, but I am not sure yet if I will be able to. I have to do a few things tomorrow but I am not yet sure of the timing."
Roy Wilders left a comment for mary"Hi Mary,
Thanks for your comment, with regards to my Mum and her health she has suffered most of her adult life with what was diagnosed as Rheumatic Arthritis. When my sister began to suffer symptoms (worse and different to what my Mum has had),…"
Erin left a comment for mary"hey mary. thanks for thinking of me. wish i could better drag myself out of bed to go to these meetings. i know i need to go, at least for the interaction with human beings other than my husband. i feel so isolated, and this can really exacerbate…"
mary left a comment for Christopher"Hi. Glad to have you here and to read your story. Even as a woman who had my symptoms appear more slowly and randomly at an even much earlier age than you, I can still relate to so much of it. I have just applied for Social Security and I am curious…"
Profile Information
- About me:
- I have had fibromyalgia for many years. I am female but interested in the different challenges that males face. I go to a support group which is pretty much all female and find it very helpful to share with others who "get it". I think it is an awesome idea for a men's group seeing as there are rarely any that show up to any of the groups I've been to. I like to observe the similarities and differences we experience.
- Relationship status?
- Single
- Do you have fibromyalgia? If so, for how long?
- Yes. I am 38 and have had it since childhood.
- What is your current treatment protocol? Supplements?
- I have recently resorted to taking several medications. These include antidepressants, muscle relaxers, pain medication, thyroid hormones, and others. I also do not eat gluten, cows milk or products, soy, alcohol, or sugar. I supplement with various vitamins, amino acids, probiotics, and essential oils. I also use a Netti pot for rinsing my sinuses. I don't work and take the needed time to rest. I limit various activities when possible in order to avoid flare ups.
- Favorite activities/hobbies?
- These are greatly limited by my health. I like to read. I enjoy learning new and interesting things. I like to hike. I enjoy yoga and similar centering exercises. I like to be on the lake in a boat. I don't know how but would really like to learn to make/ repair furniture, sew, paint, photography, organic garden, and other creative endeavors.
- Favorite music?
- I like nearly all kinds. My least favorite is heavy metal and crude rap songs. I often find my self listening to new age or spiritual music that is good for meditation or yoga. It calms me somehow.
- Favorite TV shows/movies?
- Lost. History and Discovery and Science and the Green channel shows that teach me new things from ancient archeology to the most modern science advances. Some of the comedy I like includes Colbert Report, Scrubs, That 70's Show, Malcolm in the Middle, and many others I can't think of right now. I like parodies of news and commercials and so forth. These are only a few of the types of things I like to watch. I no longer have Tivo so watching anything with commercials drives my berserk.
- Favorite books?
- Too many to list. I love to read. I mostly read nonfiction because there is so much fascinating stuff to learn about. Many of my books are spiritual or psychological or medical. (Part of looking for answers to the issue of being sick constantly) Fiction is great as well, I just don't get around to reading as much of it.
Mary's Blog
My first blog post
What I know for sure.
Nothing.
If I only had one word to describe my personal observations of "life, the universe, and everything".
Paradox
Nothing.
If I only had one word to describe my personal observations of "life, the universe, and everything".
Paradox
Posted on November 13, 2009 at 10:07pm — 1 Comment
Comment Wall (8 comments)
- At 8:34am on January 18, 2010, Roy Wilders said…
- Hi Mary,
Thanks for your comment, with regards to my Mum and her health she has suffered most of her adult life with what was diagnosed as Rheumatic Arthritis. When my sister began to suffer symptoms (worse and different to what my Mum has had), she was fortunate enough to see a GP whose own daughter has FM and was able to get the relevant tests for both my sister & my mum to ensure they were diagnosed correctly.
- At 6:40pm on January 17, 2010, Erin said…
- hey mary. thanks for thinking of me. wish i could better drag myself out of bed to go to these meetings. i know i need to go, at least for the interaction with human beings other than my husband. i feel so isolated, and this can really exacerbate the depression at times.
- At 3:34pm on December 30, 2009,
Reverend Kurt fondriest said… - thanks for the welcome mary
peace
rev. kurt
- At 12:23pm on November 28, 2009, Clarence Abrahamson said…
- Mary:
The reason I was questioning the doctor about having cf and fm is because I don't have the points I have seen in various articles. I just started Gabapentin (600mg) recently and was not taking any medication for cf or fm. My doctor is a infectious disease specialist and very knowledgeable and I believe her but want to test her feelings about it.
I think my problem started in about November 2002. I had had prostate cancer surgery in November 1992 and evidently a very small part of the cancer was laft. My PSA readings were very low until May 2002 and my oncologist suggested I start hormone therapy. My first 3 month shot was OK, no reactions, my second shot was OK too, but when I took the 3rd shot within 24 hours I started having night sweats so bad, I needed to chabge sheets and pj's and I could hardly get a nights sleep. Also at the same time My lady friend I was living with had breast cancer and I was taking care fo her. In other words I was a wreck. I have Kaiser, and i asked the doctor for something to help me sleep. My lady friend died in January 2003 and I moved to a small senior apartment and still on occasions I have sweating and have taken various pills for sleep. I have tried to go cold turkey but just lie there and after a couple days I have to have something to get me to sleep. Never could put a name to my problem till I got this one doctor. Now I am taking ambien cr and ativan and resperidal each night. At my age (85) I am like the odd man out, with the ones I see are much younger, my main problems right now are terrible back pain and unsteadiness in walking. Long story.
Clarence
- At 10:59am on November 14, 2009,
Anthony said… - I think the second one showed up we can blame fibro fog lol
- At 5:25pm on November 12, 2009, Erin said…
- hey mary,
thanks for sharing your thoughts on the savella issue. what you said seems similar to what i believe. it is very frustrating and difficult determining whether taking something is really beneficial or not in the short or long run.
it sounds like we have not met yet. i have only been to one meeting, & it sounds like you missed it because of your disability hearing. maybe i'll see you at the one coming up?
i'm sorry your disability application process has been so rough. i haven't even tried, as i know i'd have a very hard time with it, if anyone even believed me...especially the hearing in court. i think i'd crumble under the pressure. i'll be praying for you as you go through all of that. i know you may have to re-apply (as most people do), but i hope when it's all said and done that it was worth the trouble. good luck!
- At 8:27pm on November 4, 2009, Erin said…
- hi mary,
thanks for writing me. i actually went to my first meeting there at Mountain View Library last month! were u there then?
i know what u mean about the showering/getting dressed up. it takes SO much out of me, too. i look like a bum most of the time as well, always in what's most comfortable. i care nothing about how i appear when i feel my worst.
what did u want to say about savella?
- At 5:24pm on November 2, 2009,
Rick said… - Hi Mary, welcome to the site! Thanks for joining.
I'm I huge Lost fan as well!
© 2012 Created by Rick.
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