I’m so happy to have found a place to get and give support. I have been pretty down since being diagnosed. It’s a mixed bag for me. I wanted answers to what was happening to me. Why I feel so horrible. Then To get diagnosed with something that so little is understood about and there is no cure or no one treatments fits all was a big blow. I wanted instant relief. I wanted my life back. I have tried all the meds with no results. The only med that does help some is Percocet. I’m doing physical therapy, going to be starting Watzu, and have an appt. to see a pain Psychologist on the 21st. Oh and I have been recommended for a sleep study. Does anyone else suffer from burning skin? It’s all over from my head to the bottom of my feet. In my mouth, my eyes and sometimes feels like it’s burning inside my chest and stomach. I feel like I have the flu. They suggest walking but my feet hurt so bad. How do you explain things to your family and friends to make them realize how miserable you are without sounding all winey all the time? How do I get my life back? Please talk to me.
Hello, Pickadilly. What a cool name you have! It's an herb, isn't it? Something you use for pickling? LOL, or maybe not!
Your reaction to your illness is spot on. In other words, I'm willing to bet that 99.5 percent of us had the exact same thoughts running through our heads. Your feelings are completely normal. Just remember, you're Alice and you fell down the Rabbit Hole. Situations are pretty weird down here but there are nice and helpful people who want to share how to survive in the Rabbit Hole without blowing an internal gasket.
I'm sorry about your medicine situation but that also seems pretty standard here. We find one thing that helps but not entirely. Also, I think the burning sensation is normal. I've heard people say that they felt like they were on fire. But even still, I would suggest that you see a doctor and be tested for other auto-immune diseases, if you've not already done so. They tend to sometimes come along with fibro and the burning feeling is also felt with some of them.
Hurting feet is another biggie here. Some of us use inserts to help out but that doesn't help everyone.
Going for a sleep study is an excellent idea as you may very well have a sleep disorder. Many of us do, and it messes up our sleep cycles and our body's healing cycle.
PT didn't do much for me. Seeing a pain doctor did after I went through two others. But everyone is different so you might get much good from both doctors.
i would suggest having your loved ones log onto this site and read some of our stories. It gives them a real good thumbnail sketch of life with fibro. Reading how much others are affected by fibro should give them a better sense of how intense this illness is.
My very best suggestion for you is to pace yourself. This is crucial to people with fibro. So if you used to do grocery shopping in 20 minutes then went to the mall then got your hair done then picked up the kids ... STOP and rest. Sounds hokey but you would be surprised at how much that rest is needed. You can't do everything at once anymore. Shopping might take an hour now and you rest between aisles. I use a motorized scooter. It still tires me to get through the task. You might not get to go to the mall or have your hair done. You might have to rush to get the kids, then spend the next 20 minutes puffing from the energy you expended. Don't beat up on yourself. Fibro is an energy thief. You need to stay one step ahead of it. That might mean figuring out what to bring with you to the store ahead of time. Here is an analogy that explains it so well: http://www.butyoudontlooksick.com/wpress/articles/written-by-christ... It's lengthy but well worth the read. It will help you to understand how and why you need to pace yourself. I had to do that in the middle of finishing up this answer to you, had to just sit and stare into space for a minute or two, until i had enough energy and brain cells left to find the spoon theory.
Hope this is helpful,
Gentely,
Pet
Thank you for the reply. I’m reading about the spoons now. Regarding the auto-immune diseases I did have a bunch of blood work done and a few MRI’s and nothing was found except for severe arthritis in my back. I do need to find a balance as far as activity. I have always been the type to go full bore. Now I’m doing good to get out of bed and make dinner. So I for sure need balance.
Hi and welcome! I know it’s a bomb going off when we are told its fibro. You’ve got to be kidding right.
I have burning skin, from head to tip of toes. My feet KILL me. And no one better touch me, ever. Unless it’s a massage and I hate hate soft touch.
Hang in there hopefully you will start finding things that work for others by reading our posts here, that’s what helps me, I see it on here I try it. If it works I keep doing it. If not I move on to the next thing.
Everyday is different, and sometimes what worked yesterday won’t work today.
This place is really keeping me going. I feel like I always have a place to go and someone listens, or maybe I can give my opinions too. As far as family and friends, I’ve had no luck with either. So I kinda live in my own bubble and pretend A LOT that I’m okay.
Anyways hope I can help. Hang in there and I’m here for you.
Joy
Thank you for the welcome and reply. So I’m not crazy with the burning skin? I was starting to think I was. Does anything help you to relieve it? The only thing that I find that helps it “sometimes” is Percocet.
Hi Hun
I have been diagnosed since 2009 after an accident in 2007. Take a deep breath and breathe. There is a lot to learn and a lot to get your head round all while being in pain but you are in the right place. I am quite new to the site but have found it very useful. I am in the UK but many of the treatments are the same.
I found physio really painful and no help but it is on the established treatment path so had to do it more than once. Many of us have problems with our feet mine are sometimes too painful to walk. I have a great foot spa. It helps. I can only tell you what I do but we are all different and you will have try things out. I also find some things work sometimes and then not others.
I have a permanent cold not found anything to help that yet.
Please feel free to contact me.
Nicola
I myself was just diagnosed last week with fibro. I suspected that that's what I had but was told a month ago that it was CFS.It took a very long time to get a diagnosis. It's extremely difficult to deal and suffer with something nobody can see or understand no matter how hard you try to describe what it feels like.I'm use to that kind of skepticism because having depression for so long. The reality is that we tend to judge ourselves a lot harder than others do (even though it doesn't feel like it).
The BURNING! My feet and ankles are the worst. I have to leave my feet out from underneath the blanket at night....wearing socks and shoes even when my pain isn't as bad the burning is always there. My eyes feel like they're burning out of my head.My mouth too.I thought it was just me!
I started 20mgs of elavil last thursday and I've been on Percocet for quite a few months.I have to say that since i started the Elavil,when I wake up I'm still hanging on to the dresser as I move across the room,but the pain isn't quite as extreme. I'm hopeful.Appearantly Elavil is quite effective and this is only 20mgs. Plenty of room for increase says my doctor. It's been a slippery slope with the percocets tho. I am perscribed 3 a day and now they're not cuttin' it and they won;t increase the dose. I share your frustration.