You are so right! We are very happy to have you with us here!
Hi Brian, and welcome to the fibro site! I'm sorry I didn't respond sooner but couldn't quite understand your posting earlier, thanks to the fibro fog.
I'm really sorry about your friend. Can't imagine anyone having fibro and being "fine." Good days, yes; fine, no. It's too bad that so many people feel inclined to do a comparison. "My mother has it and she's fine!" Would they ever say that to someone suffering from cancer? "Hey, buddy, my friend also has lung cancer and HE'S fine." See how stupid and insensitive it sounds when you attach the sentiment to another illness?
I'm GLAD you were able to get SSDI for your illness. And that you have a supportive wife. But I'm sorry that you've lost so much of your life. It just eats and eats and eats away at our lives, until it seems that we have so little of ourselves left, in some respects.
You've come to a good place for support and understanding. It really helps to read the posts and respond. It's such a relief to find out you aren't alone!
Hello Pink,
Hope you are doing well. My thoughts are with you! We're all still pullilng for you!
SK
It's amazing what people think when you tell them you have fibro. People who have never a major medical problem happen to them or a close family member just don't understand. They see you on a good day and think your lazy, dont want to work, or what ever they think. But they don't see you or talk to you on a foggy day, when it takes forever to remember where you are at, who your wife is, or the day you got lost in your own home town because you got foggy. Or understand the reason you sleep so much. I like the old saying of "don't judge a person until you have walked a mile in their shoe". The people who have doubted me and have seen me in a fog, don't say anything to me about not being sick.
Brian, I am with you on that. Unfortunately our disease is something that doesn't show so people, even those close to us, cannot understand how serious it is to us. Lately, I have been wondering if the reason the people I live with - my husband and mother - DO NOT WANT to understand because then they would actually have to change their reaction towards my pain - like sympathize, give me a massage or sometimes just a pat on the back for something I have accomplished a particular day even though in pain. They would have to change themselves. Or, maybe it is because if they 'understand' then they will feel helpless and guilty. Either way, it is to their advantage to ignore the fact that fibro exists and is debilitating.
I actually make it a point to observe people's reaction when I say I have fibro. I either get no reaction, or a blank face indicating this isn't anything serious.
Hi everyone,
I got sick of hearing myself complain today, missed my little grandsons, that I haven't had down for weeks, so I decided to do my exercises, get a bath and shampoo, eat and take my meds, and called to get them, BECAUSE I decided that even though I was not feeling great, I was not feeling my worst either, that today may be the best I was ever going to feel the rest of my life, and that I was going to have the boys for a couple of days!
So far all has gone well, now, the trick will be to get some sleep before they are up again!
Hope everyone has a good 4th of July, our day of Independance!!
SK
you have a great day too. And enjoy those grandbabies!
SK: Good for you! Be proud of what you accomplished today and believe you will have more good days. I go through the same thing with my grandchildren. I want them to come over but then think can I handle it? And sometimes after they leave, I crash the next day but I feel great that I got through it!
Jo
Awwwww, that sounds wonderful! Yep, there's nothing on earth like the love of a little one. I hope you had a great time with the grand-kids, SK! And good for you for getting yourself up and over to them. No mean feat! I hope it was a wonderful 3 days.
SK said exactly what I was thinking Pink. I have learnt that the best thing you can do is be here with people who understand. I have had it for many years and have had to go through a lot til I accepted it all (and still am).
if you have just been diagnosed you will still be in a shock and denial phase. I don;t discuss my illness to "normals" but have found great support online with people who know I am not just whining or moaning even though sometimes I am.
It's ok to be upset. it is normal. I am only new to this site too but know that being places like here has been invaluable to me and look forward to getting to meet new friends here like you.
caroline xx
I have awakened myself up sleep-talking that I attest to the pain. I never did this before fibro. Then, I will get the most restful sleep that is wonderful. As for remarks, I get them. My father tells me to get out of bed when I am in a fog or really in pain. He wants me to exercise more. I am not there yet. My boyfriend goes with me to all my drs appt so he understands.
I am a multiple chronic disease sufferer as most of you are. I have a lot. I got my disability before I got fibro. However, it has become my major problem and makes everything else work.
I was just reading in Consumer Report Health regarding their opinion on so many supplements-most were not favorable. They prefer you eat your supplements through your foods. Dr. Oz has a lot of herbs and supplements on his show. It may be worth studying his website.
I have always cooked healthy. As my boyfriend said he has eaten more foods that he never knew existed, but everything is good even if he has to ask what it is!
Yes, I feel better now that I have a place to vent. My pain dr gives me 15 pain pills a month and I feel degraded. Everyone should feel good in their own home. We all need our own self-worth. We just have to realize not everyone can understand the pain associated with this disease. They don’t have it, and we never want them to.
Jillian,
I am so, so sorry about your horrendous pain...spinal acid??!! That must be one of the worst pain people can have. I understand why you don't want to live another pain. I have those days, too. My worst pain is my neuralgia in my left side of my body which feels like thick ice picks digging in my body slowly and they are stuck and they are electrofied with midium voltage. Trigenminal neuralgia is the worst because I can't even keep my eye open when the pain penetrates through my sinuses. It is truly debilitating. It's worse than the fibro pain because it's so intense. I agree, I Don't think your spinal pain is fibro pain. You should be checked out by a good neurologist.
I am sorry that you feel that no one wants to see you. If I lived near you, I would love to come over to see you (esp. when you have a nice clean house!!) ;) I'll bring some snacks and we can watch funny movies or do something we can do together to distract from pain. If you can't move, I can read funny stories for you! I watch comedy movies when I am in pain and it really helps to laugh. Of course, you have to find the pain meds that works for you. You need more than 15 pain pills!! That's insane. I think you should find a new and better doctor. Please be checked out for your spinal pain...
Sorry you have this intense pain. My ear is aching today. I had to go get a bladder treatment today for my chronic bladder disease and he keeps the air so cold it kicked off my fibro and my ear. I have tried to sleep for the better part of the day. My hand tremor is worse, but I haven’t lost anything!
Hope your night is better.
How are you Pink, haven't heard from you in a while, hope you are so well that you are out enjoying life!
Hugs,
SK
Jillian,
I am so glad that you had help. I've also had divine intervention-like experience in the past when I was seriously suicidal. For me, it was a vision. I saw a goddes-like figure surrounded by light that's not of this world came down from sky when I was lying in bed. She came down and put a blanket made of golden light over me. I felt such comfort and unconditional love that I never felt in my whole life, I knew that I was going to be all right. I was not asleep when this happened. I did not see this with my eyes but I saw it with my soul, I think. I am an atheist and I can't explain what happened but I will pray that the godess will visit you, too.
It's great that you were taking meditation class. Can you keep practicing it at home as long as you can torelate it? I do it everyday when I can. It doesn't have to be long. I know attending class is challenging. I had to quit Tai Chi class. Please, go see your teacher, though. I have a feeling that she can help you.
I've told doctors that I scream in my dreams and I have too many nightmares. They told me to do some relaxation before going to bed which is difficult for me because I feel agitated and depressed at night and I don't know why. I feel like I have a double personality disorder. I am cheeful and positive during the day but I become irritable, agitated, depressed at night. I've been like this my whole life. The pain gets worse at night, too.
youre not alone at all! i feel the same way, i can be sitting in my room crying in agony yet i question whether it is real! please please message me, im always here to talk and i wish you all the luck in the world
xoxo
-ali!