Fibro Challenges Online Support Group

I guess maybe I 'm just in a bad stretch, but at this time 2 years ago I was able to go camping and hiking with my family, canoe with my husband, take the dog for walks, go shopping with my daughters, garden, ect. Last year at this time, we had to drop the camping and hiking and the walks with the dog weren't as long or as frequent, same for the shopping trips.

This year - The pain has been so intense and the stress of trying to cope at work has led me to panic/anxiety attacks. The doctor has taken me out of work and referred me to a psychiatrist (He says he's also a pain specialist, tho.) I have to use a bath seat to take a shower becasue it hurts to stand up for that long. I have to lean over to wash my hair because it hurts my arms too much to raise them over my head. Just sitting here at my kitchen table typing, my back is screaming. I try to walk around my yard with the dog and it feels like I've run a marathon. You get the picture.

I'm 52 years old. If this is what I've come to in 2 years, what will the next 2 bring? Or the next 20?

Is this my new normal? If it is, I guess it's a good think I'll be going to a shrink, because that thought depresses the hell out of me. My husband tries so hard to be supportive, but he sees me lookng just the same as always and can't quite wrap his head around what I'm going through.

Thanks for giving me a place to vent.

Scarlett59, what you are going through is such classic FMS, and we have all been there. That said, I know that doesn't make your pain and fatigue any better. Hopefully it does help to know you aren't alone and that everyone here understands because we Have been there.

It's always hard for our families and friends to really 'get' it. How can they without being in our skin for a day?

Take advantage of seeing a psychiatrist/pain specialist because it may help you to get through the acceptance stage of fibro, which is so important. And you may find that your 'new normal' isn't as bleak as you fear.

We are all very different in our sameness, but for me, the first two years of having Fibro were the worst. The debillitating fatigue, the constant pain. It was like having the flu hit me every couple of weeks or so, once it stopped being every day.

Then I was diagnosed by the rheumatologist my pcp sent me to and he gave me Mirapex samples, as he had just finished a study using that for FMS. At that time it was only approved for Parkinson's. It was almost immediate, the relief I felt. I slept better and that helped everything else to feel better.

Then he stopped giving me the samples, Medicare wouldn't pay for it because it wasn't an approved FMS med and I was almost back where I started. But over time, the symptoms have decreased for me. I can't take any of the approved meds due to bad side effects or allergy to them all so far and I can't take NSAIDS for imflammation either, so am high and dry mostly.

Still, it is so much better than the first two years. I can function most of the time, and the silver lining to all this for me is that once the initial onset and the horrible severity ran it's course, it is constant yet not as severe most of the time. This is only my personal story and everyone has their own. I just wanted you to know that the future doesn't have to be bleak and without hope for better days. There can be and I'm sure there will be for you too!

Read all you can about Fibro here and the Articles forum where there are wonderful writings about the stages we have to get through to be able to manage our lives and not let Fibro define us. You will learn about pacing yourself and knowing when to rest.

So take heart sugar. There is sunshine ahead for you too!

Have a good day and do something to pamper yoursef today.

{{{hugs}}} Karen

Your message brought the firts tears of joy to my eyes that I have experienced in some time. Thank you and God bless you.

<3 any time miss Scarlett Hope you stick with us here and join in the discussions any time. We will enjoy getting to know you and hearing how you are faring as time goes by. Be forwarned though....we are a loverly bunch of coconuts, emphasis on "nuts" LOL.

Support, caring and humor is what keeps us going and our spirits up.

(self-portrait)

p.s. week-ends are slow around here sometimes, so be sure to check in tonight or tomorrow so you can meet the rest of the 'bunch'.

Post edited by: oregonnative, at: 05/06/2012 09:55 AM

Sounds like I'll fit right in.

Hi Scarlett59~

Welcome to our fibro "family". Reading your letter sounds a lot like me. I have many days that are not "goog" days also, however I am not your normal fibro patent. I also have systemic lupus, heart disease and a whole long list of other health problems and they are a pain in the butt! I know where you are coming from, it is very difficult to find that you are so debilitated util the doctors get it under control. I take many meds and sometimes because of other problems, I may have a bad day because of one of those problems. Don't worry though honey, you have just made the best move of your life. You will get more support, understanding and caring here than you can imagine.

I echo each of Karen's words. They are oh, so, very true. She (Karen) is a very special person here, and valued person. She is so kind and understanding and caring and much more.

I am a group leader here and we have another very special group leader and her name is Missyme, but she goes by Missy. She is very caring as well, and supportive, all of our members and special here and that includes you!

Please feel free to join in any ongoing discussion, or start your own like you did here. I look forward to getting to know you better, sounds like you will fit in perfect. So, kick back, relax and make yourself at home here. If you have and specific questions on what meds we take, or what works for us, please feel free to ask, but like Karen said, although we are the same in having fibro, we are each individuals as well, and what works on one person, may not work on another, but we can let you know what we take, and you can mention it to your doctors and see what they think about it and if he/she thinks it will work for you.

Warm welcome Hugs~

Christine (aka Chrissy)

welcome to the family scarlet ~ you have made a wise choice in finding support. it is so crucial. i didn't find this support group for several years after developing fibro so kudos to you for reaching out and being proactive in your own care.

karen has said everything so exquisitely as has christine that i don't have much to add except ask as many questions as you want. sometimes those of us who are living with fibro are more informed than many docs, unless you are very very lucky!

are you attempting to find a fibro cocktail? and what headway have you made so far in reducing your symptoms? it can be done so hang in there!

just know that we are here for you ~ so ask, vent, share, whatever you're comfortable with.

there is hope!!!!

hugs and love.............

I don't know about a "fibro cocktail", but I am on Celebrex for my osteoarthritis. Because I also have colitis, it is the only NSAID I can tolerate. I am also on Prozac and Welbutrin because the doc said anti depressants can help lessen the pain. They tried me on amitiptyline, but it zonked me too much, so they changed me to gabapentin, in fact just increasing my dosage. I am a recovering alcoholic,(5+ years - Yay!) so controlled substances for pain such as vicodin or darvon are not options.I also use supplements like magnesium and melatonin to help with sleep and leg cramps at night. With being refered to a new doc, I'll see what happens. I know there is room to increase my dosages for the prozac and welbutrin, or maybe there is a different antidepressant that works better. And I keep praying.

Thank you all for your welcome and support. I'll keep you posted.

hi again scarlett! i too am on celebrex for arthritis and it has been incredibly helpful.

yes, some anti depressants can help lower pain. cymbalta was the first one that was tried on me and it did help a lot. if you would like, i can pm you the formula that my fibro specialist wrote down for me for a fibro cocktail. maybe your new doc might find it useful.

looks like you already have gathered lots of info on what helps us. i also take magnesium and malatonin as well as many other supplements.

i found that you just have to keep trying to find what works specifically for you ~ and yes, keep praying!!!!!!!!!

hugs..............

Hi, Scarlett, welcome, yes, the first couple of years are probably the hardest for most of us. It's getting used to our "new" bodies and limits, and used to the pain. After a while, whether for good or bad, I got used to most of the pain, and only an extreme fit of pain, the Fog, or weakness gets me down (AFA Fibro--illness gets me worse, because the pain of illness is highlighted by Fibro). After a while I got used to my new limits. Not always pleased about them, but accepted them.