I know none of you have met me, and these boards are pretty much anonymous which is why I have chosen this medium for my expression. I was diagnosed with Fibromyalgia in July of 2005. I had some pretty bad car accidents, as well as a severe motorcycle accident. My doctor said the most recent of which really acted as a trigger to bring the symptoms to bear. I am a 34 year old male, and worked as a computer engineer for many years providing service to some of the worlds top banks. Prior to becoming disabled I worked for a large health care organization as Unix performance technician. I am trying to find things to be grateful for, something to lift me up. I know that I have a reasonable life financially as I had a disability policy in place, and I also receive SSDI. However I am too be quite honest extremely tired of living. I am tired of either feeling like a drugged out junkie, or Mike Tyson's punching bag. I can't sleep, I have almost no appetite, I can't sit, stand, or walk for any length of time. My back, neck, shoulders, legs, butt, and pretty much everything else hurts all the time. I am losing my relationship with my wife, because I am so irritable and in pain all the time. I have constant migraines, and I mean head down, dark room, no loud noises type of severe migraine. I feel useless, since i can no longer work. I feel like I have no quality of life, and thus, no reason to live. I have begged my doctor to find me something to give me my life back, but i just keep hearing the same thing over and over, like a bad eastern mantra, "There is no known cause or cure for Fibromyalgia".
I used to be a very active person. I rode motorcycles, went scuba diving, hang gliding, para sailing, hiking, biking, worked out at the gym, and loved to fly airplanes. However now I can't do anything. Basically I am tired of my life. I feel as though I have nothing left to offer the world, and basically no relief in sight of these symptoms. On some days like today I am very lucid, and can think well, on other days, I don't know my own name. The other day my wife asked me why her car keys were in the freezer. To which I replied I had no idea. Now she knows she didn't put them there, and unless we have little invisible gremlins or ghosts in our house, then I must have done it, but have no recollection of doing it. I am very often absent minded and I find my memory slipping. In fact I often question how to spell a word when I write, which is odd, because I have always been an excellent speller. (thank god for spell check)
I have decided that I am going to the hospital, and give them an ultimatum, find a way to improve my quality of life, or I am ending it. I mean I am freaking 34 years old, hardly over the hill. I should still be having fun, and enjoying my life, not living like this. This is completely ridiculous. If this is medical sciences best effort in helping me, then I suppose it will be up to me to take matters into my own hand. I can't live like this anymore.
Does anyone have any ideas, as to what I can do about this? Or should I just throw in the towel and realize that I have been licked and quit?
Your comments and suggestions are appreciated.
The following user gives a hug of support to fibroguy: louisef1 (02-27-2011)
Don't give up. Don't you still have good days?
I know what you mean. I live for the good days. This summer has been terrible. I love to ride with my husband in our Ural sidecar. Last summer I went all over with him in it and had a blast. This summer I haven't felt like it at all hardly. It's very frustrating. I just hope next summer will be a good one for me.
You are very young for this. I am too at 38 I feel like I'm 70 sometimes. I can't imagine what it would be like for a man to go through this. But, life is good. Even small moments. Like ice-cream.
I know it's hard. There's so many with this pain. Some worse than others. I can't get over how many there are of us. We are supposed to learn something from this. Hang in there and get some positive support. Please.
Thanks for your reply and encouraging words. I guess the worst part is trying to get my wife and friends to understand my health issues. They don't see me bleeding to death, or in a wheelchair, (although I do use a cane for balance issues), so they assume I am just fine. "Suck it up they say, don't be such a whimp". I have a very high tolerance for pain, and can put up with quite a bit. I mean after all I did ride motorcycles, and I had been in an accident before, so I know all about road rash, and careless motorists. My issue, is that of late there have been more bad days than good days, and the constant stigma that is placed on us men to be strong, etc. is getting really old. I wish I was the man I used to be. It is just the constant migraines, and dull daily pain that I can't take. I run out of energy easily, and I find it difficult to push through. Sometimes I start a project at the house, and half way through it, I run out of gas, and just have to sit for a while. Which of course make everyone else think that I am just lazy. I am so totally not lazy. I spent the better part of my career traveling around the country solving the computer problems of the top world banks, and these aren't pc machines either, but systems that cost well over a million dollars. I guess I would just want someone to understand what I am going through, and recognize the struggle I am going through. I am going to see my rheumatologist and ask him if maybe there is a different combination of meds that he can put me on. I just need some energy. Well again I appreciate you taking the time to send your kind words, and I am going to keep looking to see what else I can do to make things better.
My good days are far and few between...but I do have good days, not great days; but a good day feels like winning to me. The problem with ending it all, is that there's never a second chance, never an ending to your story because you closed the book in the middle. All the things you might be able to do someday, things you might be able to accomplish, will be left undone.
When I was first diagnosed, I couldn't wrap my mind around the fact that I'd never be the same again. And it made me angry when people said, "Well, it's not terminal, so that's good." Not how I saw it at all. A terminal disease let's your mind find a conclusion to the pain and suffering...death. I'm 45 and widowed. My husband died of cancer 4 years ago. And I thought terminal was preferable to this non-life. I still feel that way. BUT, my family doesn't see it that way. They need me, even though I'm now this bundle of pain, airhead, clutz, who stops for green lights instead of red, who drops conversations in mid sentence, who bores them all with every symptom (new and old) that I have. They prefer me here. Where I can smile through the pain when I do or say something totally out of character. Doesn't seem like much when I used to regale them with my skydiving, rafting, full-out, off-the-wall, off-the-beaten track adventures. But it's enough for them, so it's enough for me.
You'll find your 'enough' if you look for it. It might not be grand like it used to be, but it will still be an adventure when you can smile through the pain.
Please come back and talk to us, share and commiserate with us. There is healing of the soul to be found here with the people who understand your pain.
Please, as others have asked, don't do anything to yourself, seek guidance be it counseling or talking to the clergy, someone. I'm going to write this as a friend, as a mom and as a fellow sufferer.
My son had depression and always thought life was too hard. He ended up shooting himself in the temple in a park one night. He was so wrapped up in the pain that he was having he couldn't see beyond that. I doubt that he knew how much this would trickle down and effect other people. I'm sure that he didn't think about the elementary school kids finding him on their way to school. It was a nightmare, having men in trenchcoats knocking on your door..........it was just like in the movies. That will have been 13 years ago in Jan., maybe that's why this has effected me so much. He was almost 21.
A good share of us have lost careers also. Mine was in graphics, commercial art. I worked a few years, get real sick, quit and do this cycle until 2 years ago when I went on disability. We grieve for the person that we were and we get through it ourown way and in our own time. You can either choose to face this disease with dignity and grace or not.....only you can make that choice.
Losing all of the sports and past times is a hard thing to lose. removed, I played 1st base, was on volleyball team, I bowled, etc.. I was busy 24-7. I also had 4 kids to do the mom thing for. I just had to find other things that I enjoy doing. I write, I've started to send out manuscripts.....I've got this one and two others I'm tweaking. Even if I get refusal after refusal, I'll keep trying. I like to do bead-work and crochet. I've always loved to read and I do that more often. What I'm saying is that although you think everything's over for enjoyment, etc., you have to discover what your hidden talents are.
Like Blush, I have to be "the rock", I've had to be all my life. It's hard! You are going to find who your true friends are. You may lose some of the ones you have now in the process. A true friend doesn't dis-believe your pain or think you're lazy.
I live in dinky Delaware and I have a wonderful pain management Dr., there's got to be someone in that huge state that just specializes in pain management. If you aren't given the proper types of pain management everything is effected by that, sleep, memory, the severity of pain, etc.. There are non-medicine things out there too. I had 24-7 occipital headaches, with the no light, barfing, etc. too. All the pain and migraine medications didn't help me because I have nerve entrapment. I got ablations for 7 years and they started not to work, but after they were done I had fewer headaches for almost a year and that helped, because my body wasn't so taxed from them. This procedure about once a year was worth it. I now have 2 leads implanted under the skin on the left side of the back of my head and wires going into a battery pack on my lower back. After this was put in and they turned it on in the recovery room my headache went completely away. The doctor, nurses, the stim. guy, we all cried. That hurt mega bad, but after about 4 days it got better. I have that stimulator on all the time. The batteries age good for about 8-9 years if you charge them up on a regular basis. It short-curcuits the nerve and I don't have many headaches anymore. I'd say 80 are gone. You can get trigger point injections, massage, nerve blocks, etc.. You'll never be the old you, but these can provide you with a better quality of life. Search on the web for these procedures.......a few days of uncomfortable is worth months without that constant pain. There are options, you have to find them, they won't find you. There's books by Devin Starlanyl M.D., she has it. Get the one that has both fibromyalgia and myofascial on it, it covers more. It answers questions and gives you reasons why things hurt, it also gives you all sorts of options, what to ask doctors. I refer to it all the time, when I travel, etc., it goes with me. Please search for doctors for your physical and emotional problems. If they don't want to work with you then keep searching.
I've been where you are and it's a very scary place. I think there's probably people on here that hurt so bad that they wish they'd never wake up again. I know that when a flare lasts for a few days I have a pity party, but then I have to regroup and get my ---- together. So don't shut us out, please take to heart what we reply to you, if we didn't care we wouldn't bother to respond to you. You picked a great site.
I don't know why the stigma with being male is like it is. I love a guy that shows his feelings and shares. Times they are a changin'.
Please take to heart what we have written to you. Life is hard enough to deal with everyday, these diseases just make it harder. Like I've said many times on here, arm yourself with knowledge. I get a quarterly newsletter and it has all the latest research, new medications in the process, what makes our brains make substance-P keep firing all over our bodies (the research on these are really interesting to see).
Please don't let your family have to go through what I did when I lost my son. It played out just like you see on TV when the guys with trenchcoats knock on your door and ask questions, etc.. I knew he was gone before they ever got to the door, I felt it. Life is worth it, you just have to find out why it is for yourself. Keep on this thread and let us know your progress. Just keep in mind that you are worth it. Although we'll never know one another, we develope friendships on here. Look on older threads, there's a lot of useful stuff on here, serious and some with humor, which I usually to throw in there. Seeing your thread brought back things for me and believe me your wife, friends and family don't want to go through that. Hang in there.
Last edited by HBMod07; 09-22-2008 at 06:36 AM.
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fibroguy-I'm glad you are going to go see your rheumatologist. There's so many things to try...it takes awhile to find what works good. The tramadol has been very good to me. I'm getting to the point though that I'll need to try something else. I also have a high pain tolerance. I think that makes it harder to know when to stop and chill out for a bit. I feel guilty when I'm not doing anything,but I'm learning to let go and just relax a little...there will always be tomorrow. I use to be obsessive compulsive but with fibro I'm too worn out to be!!! At least it fixed one problem. I hope your wife gets supportive. I'm very lucky that I have a supportive husband. It's so important.
You guys nailed it...about not being yourself- like how you use to be. I'm always thinking that about myself. I use to want to go places - now it's almost as if I'm agoraphobic.
AnneBoleyn- I'm sorry about your son. I couldn't imagine. Depression is the worst.
I'd read anything you wrote..you do have a knack.
Tired of fibro? Yea!!!!!!!!!!!!!!!!! And it's only been 10 weeks for me. I won't even be "officially" diagnosed until this week, but I'm sure that I have it. Some days the pain is so bad that I just cry. And then I think "this isn't helping anything". I told my mom the other day that I want to just go to sleep and never wake up and she said "you don't mean that". I said only because the only time that I am not in pain, is when I am sleeping. I would never "leave" my kids like that. But the thought of living with this pain for the rest of my life is very depressing. Hang in there with the rest of us! Come to these boards often and you will find that you are not alone. Let us know how you are doing!
I just want to tell you that YOU comforted me. I have had the feelings so many times that I can't keep on like this, DON'T WANT to go on like this, can't take anymore and just want it to be over - completely over. Your post hit home with me and I understood everything you said. I don't have anyone to talk to other than the wonderful people on this board and honestly, without these angels letting me vent and sharing their lives also, I truly would be at my end. I guess I gain the strength to face another day from getting the understanding we get here.
Please keep posting and share with us how things are going.
The thought of seeing my child die or going through an experience like that is terrible. I can appreciate your pain and for that I am truly sorry. Maybe I am just being selfish. Everything that I used to take for granted has become impossible at times on bad days. I guess sometimes it becomes overwhelming and I feel like my family is better off without me. My kids dont bother asking me anymore to be involved with them. They know I suffer a lot and on the one hand I guess I can learn to live my life differently, but knowing my kids see me as someone who is incapable. Missing out on their lives is what hurts me most. Thank you all for your support and help.
selfish? no. scared, confused. yes. your emotions are normal for the life you are now living. how you choose to express those emotions is and will always be up to you. not your illness.
does granada high still exist? i was class of 73. does the community hospital there still have a p.t. unit with aquatic therapy? moved away in 74 so my knowledge is ancient. if they do i suggest aquatic therapy to get you back to being as active as possible.
i have been at this fibro game for years, along with other health issues. i did alot of time in the shrinks office. not because i was crazy, but because i feared going crazy. i learned alot there. coping skills mostly. life savers for my sanity. i decided being angry was only making matters worse. denial didn't work either. so i decided to invite it all in for life and just hang.
i spent years in p.t. getting back my mobility. it is still worth it. i can run again. i can kayak and dance.
every persons life changes day by day. it is only thru adaptation that we evolve, survive and find our smiles again. at one time or another even healthy people would like to skip their lives.
I know you feel hopelessness. Fibro is a constant battle of various ailments, moods, uncertainty. The medical community knowing very little about it is no help. And the people around you not understanding just makes it worse.
I think everyone on this board can relate. You are not alone.
You've taken on big business, you can take on fibro. It's just a different approach.
Let's get you a plan:
-Definitely address your depression. I agree that a therapist is a great resource. There is a lot to handle with life, then fibro added to it- it can be too much. A therapist can help. Also, you and your wife should go to couples counseling. (I believe in therapy for everyone, and for all couples, not just fibro related)
-Have you been tested for other ailments? Fibro can be combined with other things. Since you've been in accidents, have you had any chiropractic work? I recently found out that I had hurt my neck without knowing it. A CAT scan revealed the injury, which is likely responsible for my daily headaches. I would think the migraines could be addressed here.
-Get your Vitamin D tested. I know you're in a sunny state, but it's worth checking. B12 shots might be of use, too. Eat non-processed foods as best you can. No diet pop!
-Have you tried a naturopath? Accupuncture? Massage?
-Have you had any allergy testing?
My chiropractor said there are three areas that people need to manage:
-chemical: (means your body chemistry, hormones, etc.) this is your dr. or naturopath
-emotional: this is a therapist
-structure: this is a chiropractor
I call these three people my team. Doesn't mean you have to go to them all the time. And not everyone needs a chiropractor, but that means their structure is fine. Mine wasn't so I needed to add a chiro to my team.
My kids dont bother asking me anymore to be involved with them. They know I suffer a lot and on the one hand I guess I can learn to live my life differently, but knowing my kids see me as someone who is incapable. Missing out on their lives is what hurts me most. Thank you all for your support and help.[/QUOTE]
Fibroguy - You don't have to miss out on your kids lives. Your kids don't see you as someone who is incapable. They see you as their hero, dad, provider, protector and it is hard to see their "Daddy" in so much pain. They see your hurt. You have to set your priorities such as.... if your kids have something that you want to go see such as a ballgame or whatever it may be, then make sure you have rested up so that you will have the energy to be there... It doesn't mean you have to participate, you just need to be there to cheer them on... Many times we schedule so much to accomplish for the week that by say Wednesday, we are done and anything after that we cancel. Put everything on your calender that relates to your kids first and make sure that you save your energy for that. If you have energy leftover after that, great, if not, oh well... Your kids will be happy that you were there. Remember, you are their dad and that is the most important thing to them. They understand alot more than you give them credit for.
Hang in there my friend. I posted to this thread last night and lost it. I am very much where you are and was diagnosed in 2004... Those feelings come and go but I also have BiPolar 1. Please find a therapist/psychiatrist and you may need some type of meds to get you through this funk... We are all here for you. Come back anytime, we will be here. Jenn
I hope you can see by the replies that you are not alone and there are really good people ready and willing to help you.
I don't think you're being selfish...You're just having trouble finding your own way. Please take to heart everything that everyone has written. There's a bunch of good things to choose from. When you get to being comfortable in your self and reach an acceptance it'll be easier for you. It's hard to adjust and make it a part of your life. We all get down and feel sorry for ourselves at times, but the wonderful people on here really lift your spirits.
As your kids get older it'll be better too, at least it's been that way to me. It's true, your kids don't see what you see. Sure they know you don't feel well, but they do see their dad. You do have to plan around their special events as was written below. My baby, 30 is getting married in Oct., the wedding is week two, then a weekend from that I've got to dress her again for her reception, This wed. Blue and I have a similar proceedure being done, but........the end of October I plan on getting probably lost in a cornfield maze with my kids at night for Halloween. I've really got to suck it up for all of that, but I'm going to have a great time.......I owe myself that. You just have to change the way you process things. Ya know maybe you can all go to a counselor as a family, then everyone can express their issues if any.
We deal with it and it includes a lot of humor, it helps to have warped friends and family. I can't think right at times, my words get all jumbled around while I'm thinking 1 thing another comes out. On the way to and from a concert my friends and I were on the NJ turnpike forummmmmmmmever and the rest stops all were named different. The one to that we stopped at was Ulyesses (I know it's spelled wrong) S. Grant the one back was Thomas Edison and we got out of the car I was thinking inventor and what comes out??????? Oh look they must be named after presidents. 1 friend started laughing and was hanging on to the car door and the other 1 sort of melted in the parking lot. I was laughing cause I was embarrassed. All the way home, oh look we'll be going by President Molly Pitcher........the rest stops were famous people from NJ. This happened in July, but at Christmas I opened a small box and they had made me flashcards........the real presidents plus the one's in NJ. It was hysterical. I'm glad they are warped it makes things lighter for me. So see? You can make lemonade from a life of lemons.
Hope you're feeling better today.
You've been on my mind all day. I hope you are feeling a bit more not alone and not so overwhelmed as well. You're worth it.
I'm SO sorry you feel like this too. I too know exactly how you feel. You are singing my story, this time last year! I tried to 'end it all', but failed! (obviously). I'm 32yrs and feel 90yr! I have to live with the fact I put my partner through that. All I can say is now I have so many more good days, at the time, I didn't think I'd ever see a good day again. I was in such a black hole and it's taken me a long time to get out of it. I am seeing a psychotherapist on a weekly basis which has been my saviour! I also went on a pain management course. It helps (well...me) to feel as though I'm doing something to help and more importantly..other people are supporting me. My medication changes every few months or so, as I get used to one so have to try another. At the moment I'm on an anti-convulsant med which really does help with the fibro pain. I'm also on an anti-depressant and sometimes take tramadol.
I guess what I'm trying to say is hang on in there, it does get better! I've found you have to creative and try and find alternative ways of doing things. It doesn't always mean you won't be able to do the sort of things you used to, you may just have to do it differently. I have a list of things I can do (with/without my kids) on a good day, and things I can do on a bad day. Children can understand more than you realise, and mine are so sweet if we can't do a certain activity we planned coz I'm not well enough. I feel really guilty, but there's nothing we can do about it. We don't choose to be poorly. If we CHOSE to be poorly so we couldn't do the things our kids enjoyed, then OK- feel guilty- but we can't! So what's the point in using up the little energy we have on guilt!!? Besides, there is so much more our children are learning through our illness, qualities they wouldn't have, if we'd have been well. (OK so I'm clinging on to any shimmer of a silver lining!)
I hope you manage to find some relief. Warm baths help me, having slow release carbs, pacing (PROPERLY, which is hard) and complete rest. Maybe you could get some info so your wife can understand better. There is a really good explanation I've seen called 'the spoon theory' on a uk fibro forum.
Well I want to just take a moment to thank all of you here on the board that took the time to respond and share your stories, hurts, and successes with me. I know that it is a day to day struggle and I have to live one day at a time. I do hope that all of you are doing well today and are having a good day rather than a struggle. I am going to see what I can do. I have written down the names of the medications that some of you have indicated that you are taking, and I am going to present this list to my doctor on my next appointment and discuss them as possible alternatives to what he has me on now, and see if they help. My question for you all is this. My health insurance is through Kaiser as they are the supplemental that I selected when I made my medicare election. I know that many of you had said that you are going to a pain management specialist. Unfortunately I am confined to using doctors within Kaisers network of specialists, at least until open enrollment period for Medicare this next year. Are any of you on this list a Kaiser patient? Do you know of any specialists or departments that I might try, that may be better able to address my pain management?
I do appreciate all of you allowing me to vent my frustrations and talk about what is going on in my life. It is a great help to just to get it out. I think I might even start writing a diary. I know it sounds corny, but I have felt a little bit better since writing my frustrations here on this board, instead of keeping everything bottled up inside. Well anyways, need to lay down for a bit, but I just wanted to share my heart felt thanks with all of you, and see how you all are doing today.