Hi Everybody. I'm new to the boards, my nickname is Winnie. Friends think I look like the grown up version of 'Winnie' from the show ' Wonder Years'. Anyway, I have Fibromyalgia, Myofasial Displalsia, TMJ, and a sleeping disorder that may be the start of Insomnia. This has been for about 15 years now and started with a terrible car accident. I also believe I inheritted it. I have been to many Doctors who either don't believe me, don't want to help me or don't know how to help me so they don't do much! I hurt all over all of the time for reasons unknown. I can feel OK one minute and the next I can barely function. I used to be a very outgoing person, with a lot of hobbies and adventurous. Now, I work, which takes everything I have to make it through the work day and then I come home hit the couch and try to keep a 15 year relationship working with my fiance and another with my 18 year old daughter and neither understand why I am the way I am. I get so depressed and feel like I'm at my wits end. I Need to find a better job desperately, clean up my cluttered house and fix it up, along with more schooling, and other things, but don't have any energy and have trouble getting my will power to kick in. What do I do? Can I fix any of this or make it easier or anything????
I really would welcome and appreciate anything anybody has to say!!!
hi winnie------i'm glad i read your post becasue you hit on something i wanted to ask all the others. i was just officially dx with fibro on monday. all the test for RA, MS, and lupus have come back negative. have all the trigger point pain and it seems when my rheumi gives me an injection and he has given me quite a few in different areas the pain subsides and so far for mos doesn't come back. i too can sometimes get through a day and sometimes will have to sleep 16-18 hours. other days i am shot at 3:00 and have to lay down and then ihave days that i am fine. my questions is, and i ask this becasue i just read where it is possible that fibro starts with a trauma to the body. you mentioned your car accident. i have several lifting related injuries. bad back, neck, kne, ankle, shoulder. i beleive all of my symptoms started with the first injury. what do you think. what does everyone out there think. Is one of the casues of fibro trauma to the body?
No one knows right now what causes fibro, but there was a thread a while back where everyone had some input on why they think they have fm and trauma to the body was a very prominent theme.
To offer some suggestions to winnie, It seems you have the big picture of what you would like or need to do in your life. That is what we do sometimes is look at the big picture and become overwhelmed with what we see and paralyze ourselves so we don't do anything. Heaven knows it is all made harder with fighting fm.
I have found the best way to get things accomplished with this disease is to cut the big picture up in small pieces. Take one small project at a time, for instance cleaning up a clutters house. Take one room at a time and if you can involve your daughter and your fiance. When you feel better about that you can be more open minded about a new job and more schooling and maybe be able to see how one may facilitate another. I also find that I set aside just so many hours a day to accomplish a task so as not to use all my energy and be spent for the next week.
Don't expect your family and friends to totally understand what you are going through, they just can't. It is something that people can't see so they can't understand it. They still love you no matter what! I hope this help some.
ICC - I was dx(that does mean diagnosed right?) withh FM when I was 20. Had car accident at 18. I am sure that trauma is one way to bring on the FM, but I also think that it is inherrited. I believe my Grandpa had fm. He died of a heart attack when my mom was 16, but he drank a lot due to having much pain. My mom had a car accident and then there was the fm, she was around 30. My sister had a virus and was pretty sick for a couple of weeks she had the aching all over like with the flu. That never went away, dx with fm when she was 18. i will send more info in a little while. I have to run some errands quik. meanwhile, if anybody has any suggestions or other insight I would love to hear it.
Hi Everyone, sorry it has taken me so long to get back on the boards. I'm sure everyone knows these excuses: I've been busy and working, trying to get things done around the house and haven't been feeling so great lately and just can't get up the energy to get in front of the computer.
It is great that your boys have some sympathy and understanding. I am in the same boat as you with having to work because my fiance says he won't support me financially. He also tells me that when 'he' moves into his parents house that he is purchasing, I can't come if I am going to bring all my mess and clutter with me. Sometimes I worry about our future together. Granted I am a bit of a pack rat, but most of the problem comes from the house being to small and not having enough space (there is only one and a half closets) to put things in there own spot. Plus, it is hard to get just the regular house work done, much less scrubbing windows and walls, going through the stacks of junk mail and stuff, going through all the clothes that we have and keep only what we need and use and get rid of the rest. Some days I hurt so bad and don't have the energy to even open a dresser drawer. Anyway, I am trying to keep things in perspective and only picking smaller goals that I can complete in a short time, but it is still very diificult to do. Well, I am really tired so I am going to try and get more than 2 - 3 hours of sleep. I will try and get back on the boards tomorrow (Sunday) because I have some information about saceriliates (don't know how to spell that word) that I want to share with you. Hang in there and I will talk to you soon.
Welcome Darci2 (Winnie) Alot of good comments hear on this post. I'd like to respond to alot of these but i'll shorten this for now.
i feel trauma can set off having fibromyalgia, i feel probably just about anyone has had some type of trauma throughout their life time. I strongly feel Fibromyalgia has a genetic factor. I am recently finding relatives whom live a long distance from me, meaning i had not had close relationship knowing them due to living so far away from my location, have Fibromyalgia. I have a first cousin whom recently we have phone discussions regularly due to both of us having same diagnoses, fibromyalgia being one of many others.Some would think we were twins considering numerous exact diagnoses. Yes, we do resemble each other in appearances, so much as to where family is amazed by our looks. This is why i strongly feel genetics are major with Fibromyalgia.
greetings artsy and winnie,
there are alot of good men in the world. find another. i went for years with a man who chose to see me as weak and purposely pretending to be sick. jerk. it took me a long time to get my head out of my fanny and dump him. never looked back. my health improved a bit after i got him gone. less stress. lost weight too! spending time, wasting time, trying to get thru to someone who does not want to listen was wearing me out. so i quit.
i now have a man friend who does not live with me. won't do that again. he takes me to doctor appts, actually, he keeps track and asks me if i require his assistance. he knows he cannot fix me so he does not try. what he does do is run me bubble baths and give me massages and a shoulder to lean on when i am tired, so tired. that's what a true friend does. lovers must be friends first.
why settle for less than what truly makes you feel safe? fibro does not make you less human. we all need a good family support group. keep the kids and toss out the rest. please don't do what i did. decide this was the best i could do so i settled and i was miserable, verbally abused, and in the end the police were needed. sent me into a flare that lasted almost a year. my fault for not acting sooner.
if they are not kind now they will never be. respect yourself. you are beautiful and worthy of healing love.
I'm so glad you found this board. There is a lot of compassion and information that will help you. Two books to read are "What Your Doctor May Not Tell You About Fibromyalgia" by Dr. St. Amand, and "From Fatigued to Fantastic" by Dr. Teitlebaum. There is good suggestions in both of these books that will help you to function much better.
Try not to be overwhelmed! You can do this, just take small steps toward what works best for you.
I once again agree with Blue. There are plenty of good men out there. You don't have to settle for less then that. I went through two horrible men to finally find my one good man. I was cut down all the time (did not know I had fibro then) because I was always in pain and I was always tired. The first bad man did nothing but mentally abuse me and called me useless a lot. Then the second on (who while I was him I was diagnosed with FM) kept telling me it was a fake disease and to get over it. Said to quit acting spoiled. Well needless to say I left both of them in the dust. I lost the weight I had gained and a lot of the stress pain was gone. A year later I found the man of my dreams. He does everything for me. I don't even have to ask. He doesn't question my illness and doesn't make fun of it. He actually tends to worry too much, which is a nice change of pace for me. LOL! We are getting married in 4 months and couldn't be happier.
So there is hope and you both need to understand that being treated that way only makes things worse when it comes to Fibro. Take it from me it is not worth it to keep someone around that treats you like that. Especially when it affects your health. Good luck. Remember to keep your chin up and keep shining.
I think we all know how you feel, it is almost always the same story for so many of us wtih FM. I was dx in my last year of college after a whiplash accident and was bedridden for about six months. I was in so much pain and terribly depressed. When I finally made it out of school, I got a desk job which destroyed me physically, I would barely make it to the end of the day, come home in terrible pain and not be able to move. My fiance was so frustrated with me and I couldn't make him understand. I gained 35 pounds and was so depressed at that point that I went to my dr. for antidepressants. When I started the meds, I started to feel more hopeful and decided that I needed to change my life in a big way, so I went back to school for massage therapy and started doing everything right for my body like working out and eating right, drinking lots of water. it was really hard in the beginning, but it got easier, and by the time I finished massage school I was 40 lbs lighter and I felt great. Doing massage was so much better for my body than sitting in a chair all day. I ended up being in "remission" for about 4 years, barely even recognizing that I had FM, and now am just having bad symptoms again. I am going to see a FM specialist in February, and am looking into using stimulants to help get my energy back, but I am also stepping up my exercise and recently found out I have thyroid issues, so I am starting meds for that. I also have PCOS and I am choosing to treat that homeopathically because I don't want to overload myself with pharmacological chemicals.
So the point of this story (yes, I do have one, lol) is don't give up trying to find what works for you and maybe you need to make a big change to see big results. Look at your life and what makes you unhappy, what causes you stress and makes you have pain and try to change the circumstances. But take it one thing at a time and try not to get overwhelmed. Our life is a marathon, not a sprint. You have to look at the big picture. Don't lose faith!!!!
Good luck to you, and know that we know what you are going through and you are never alone!