Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Good Day,
#1 I need to find a way to explain fibro to my boss and husband. If I am having a "bad" day, my husband asks if I want to go hiking? um, NO
My boss, think I am depressed with anxiety. um, yeah that's right, since I feel like I got hit by a bus every other week. Are there websites that you can print a brochure or something that can explain how real my problems are and how THEY should handle them. I am working full time, raising a 3 year old, and have a husband that is in denial about my issues.
#2,My Rheum does not seem to address issues individually, and two of my most problematic ones are pain in the back of my head that connects to my eyes, makes me dizzy and feels like a minor migraine.
The other one is my legs, sometimes I have such problems with stairs or inclines that my legs feel like they will break from being weak and full of pain.
I had x-rays, MRI's and cat scans but, I sware there is something wrong, and will end up having a stroke or brain tumor or something.
Is this how most people with fibro feel?
Any advice will help me, i feel totally alone, like NO ONE understands, and the friends I have I keep cancelling on because "I don't feel good".
Thanks so much,.
#1 I need to find a way to explain fibro to my boss and husband. If I am having a "bad" day, my husband asks if I want to go hiking? um, NO
My boss, think I am depressed with anxiety. um, yeah that's right, since I feel like I got hit by a bus every other week. Are there websites that you can print a brochure or something that can explain how real my problems are and how THEY should handle them. I am working full time, raising a 3 year old, and have a husband that is in denial about my issues.
#2,My Rheum does not seem to address issues individually, and two of my most problematic ones are pain in the back of my head that connects to my eyes, makes me dizzy and feels like a minor migraine.
The other one is my legs, sometimes I have such problems with stairs or inclines that my legs feel like they will break from being weak and full of pain.
I had x-rays, MRI's and cat scans but, I sware there is something wrong, and will end up having a stroke or brain tumor or something.
Is this how most people with fibro feel?
Any advice will help me, i feel totally alone, like NO ONE understands, and the friends I have I keep cancelling on because "I don't feel good".
Thanks so much,.
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I have been here before, a long long time ago and now I am back.Forgive me for not just saying what I want to say,even under a triple dose of antidepressants it is still raw and seeping and I am hesitant at revealing it as at least under the bandages around my heart I don,t have to look at how raw and wounded.My child was cleaved from my heart by his own actions. my child of ten,turning eleven...
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
hope you get somewhere with it all soon take care xx
IT IS CALLED LETTER TO NORMALS
These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!". If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.
Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro, if something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.
Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
I depend on you - people who are not sick - for many things.
But most importantly, I need you to understand me.
I have given up trying to get other people to understand my condition. Your boss and your husband have no idea how you feel because they have never felt that way themselves.
My advise is to move past the understanding phase to the coping phase. Your husband (and your boss) need to know what to expect from you on bad days and what you expect from them. Hiking for healthy people is a refreshing activity, and I'm sure your husband is suggesting it because he wants you to feel better. Give him alternatives: bring you water/tea/food, draw a bath for you, give you peace and quiet, take the baby out shopping, etc.
For your boss, I suggest a flexible work plan so you can vary your hours around your condition as needed. This only works if you can track your performance and ensure your work is getting done. For many workers this request would fall under a 'reasonable accomodation' for a 'disability' but I wouldn't mention that unless they are resistant. You don't need to 'explain' your condition, but a note from your doctor wouldn't hurt.
HEE HEE....Any way ,I Can totally relate to where you are coming from..5 years ago I used to hike 7-20 miles a week,now it is an accomplihment to walk to the mailbox and back.
You were asking about websites that can help you communicate to others what you are experiencing ...as for your boss , tread lightly..I don't want to see you loose that job until YOU are ready to let it go. AS for hubby , I believe brutal honesty is the best..I think the hardest part for men, is that they are pre-wired to fix things...not necessarily to understand them.I try to make it clear to mine that I am not looking to him to fix this..just to bear with me and hold me up when I need it. For us this approach seems to work , he is a lot less frustrated now than before.Although his testerone poisioning does get the best of him sometimes. LOL ..
Anyway..I almost got lost..LOL...sites that have helped ,ChronicBabes,I think it's .com?? ..,immunesupport.com,mayoclinic.com,EarthClinic.com,fmscommunity.org ,LISTSERV@COMMUNITY.LSOFT.COM ,
then there is an article , hopefully you can still pull it up..if not , let me know and we'll figure out a way to get it to you..
http://www.sptimes.com/2007/08/28/news_pf/Features_Her_Pain_his_ache.shtml
I know that IS really long address...but the article made my hubby cry and brought him to a new level of understanding...
Hopefully I have not overwhelmed you with sites..You can also learn alot here , posting and reading.We are all in the same boat , hoping to land on that island of peace and health.
Sandra
I often tell people I have a muscle and tendon disease that is unpredictable. Its main symptoms are pain and exhaustion. It's pain is similar to the kind of aches one gets with a bad case of flu. There is no cure, it is not life threatening, but it is life altering. Depending on how long you have been with your company, your company policies, how you want to progress in the company, will all depend on what you want to tell your boss. Your spouse on the other hand, needs to try to get a handle on things. While MILD exercise is good, hiking would not, in my humble opinion, qualify. A nice walk for a couple of blocks at a leisurely pace maybe. However, on your good days, don't forget the walk! There are no pat answers for what to tell anyone. However, giving your spouse all the information possible might help to make him a bit more understanding - take him to a doctors appt, too. Those all have worked for me. You choose who and how much to tell. Your employer needs to know something, but how much, is up to you. Hope this helps. Prayers and hugs.
Hubby tries to be understanding but seriously how effective is him telling me to just get on with it going to be? No matter how hard I try I can't seem to convince them that I know more about what I am able to do than they do and if I can't cook or clean or go shopping for weeks in a row then I am NOT just giving in or being lazy!!
Nothing I do convinces them. They think I am just giving up... hubby and friend both think I should get back to work because just "laying around" is making me think about my pain more... if I was working it would take my mind off of it.... lol I can barely get downstairs and I am supposed to go back into the medical field and lift patients and push gurneys and stand in the surgery suite for hours wearing lead aprons? Are they totally NUTS? Anyway,, sorry, ranting again...lol
I too have had every test in the book MRIs, CAT scans, blood work you name it since June the only thing they can find is low thyriod and I have severe case of Hypoglycemia...So they the dr.'s claim majority of my problem is Fibro... and yes walking and steps are hard on me also...
|I also have lost some friends over this they just don't get it or don't want to deal with me. I just wished they would take the time and read on this Fibro then maybe they would have a better understanding of what I and so many other people are going through every day.
I wish you luck in getting everyone to understand.