Fibromyalgia Support Group

Hi nadya,

I feel the same way at 43. I look at school reunion (that I didn't attend) photos and see people that look only slightly older, the exact same and are still the same size! I see women my age looking sexy, vibrant and "cool" and think "I wonder if I can dress up my Dr. Scholl's shoes and stretch pants?) I work with seniors and get upset when THEY are doing the exercises BETTER than I can. Or, the little old man or lady that walks faster than me at the mall. I try not and let it defeat or depress me.

Then, I think of all the things I DID accomplish. I may not have down downhill skiing or skydiving this week but I did manage to drive quite a bit, work, made cards and even baked cupcakes.

This week, I got lidocaine injections and trying a new supplement Acetyl L-Carnitine. I also take low dose Naltrexone which doesn't do much for the pain (like it does with some people) but is a powerful antiviral, anti-inflammatory and anti-oxidant. So far, so good on not getting sick which is a reason for taking it right there.

Can you do some local missionary work? Maybe you can organize the Christmas hamper drives or volunteer at your local food bank? Maybe there's a community exchange rather than a continent exchange program you can join?

May I ask what treatment plan you are doing? Maybe it's time to "shake it up" and try a few new things. Savella is getting good results, meditation, yoga, anti-virals, low dose Naltrexone, supplements etc.

When I start to give up (and since I've had this 24 years, it happens every now and again), I just remember TODAY could be the day they find the cure. Look at the new research they are doing. We can't give up hope...ever. (((hugs)))

Hi honey,

Reading your post was like reading something that my 24 year old daughter would have written on a bad day.

She was hit with a rare spinal cord disease called Transverse Myelitis 2 years ago. Before that, she was a youth leader and worked in our church office, cleaned houses for extra money, planned to go to Nashville this year for a music seminar because her dream is to be a big Christian singer. She used to skydive and whitewater raft. She was always doing something.

Now, she is like us. She has good days and bad days. She has nerve pain and muscle pain. She gets fatigued. Her disease sounds so much like fibro it's scary.

Today it was bad for her and she stayed in bed all day. But yesterday she was making these cool Christmas ornaments out of beads and wire.

I was just diagnosed with fibro, low vitamin D and Hashimoto's disease so I'm still trying to process it all.

I've learned from her that we can't live day to day. It's more like moment to moment.

I'll be praying for you

I know how you feel, I have had this for such a long time and I can't be my age. All my friends are way older for me and I also feel that I have been cheated out of my youth. All I want to do is hike the mountains and photograph the beauty of the earth and to put it simply, I can't. So I know where youre coming from, If you need to talk or vent, I always have an open ear.
sending hugs and prayers for you to feel better

I am currently not on any kind of treatment except for a muscle relaxer. I was diagnosed 10 years ago but blew off the doctor and now am waiting to see a rheumatologist (been trying to get this appointment since last december). I hope he's good cause he's the only one within driving distance that takes medicaid. So right now I am just trying to hang on till my appointment at the end of november and pray that this doctor is good. When i was first diagnosed i had heat therapy, ultrasound therapy, physical therapy, celebrex, neurontin, and other things that i can't rememember all of. But I was 15, I got sick of seeing doctors, and finally told my mother I didn't hurt anymore. I've tried to ignore it for the past ten years although the pain has never gone away. It is only within the last twelve months that I have started to fight for treatment.
I'm sorry for the rant btw I was just super tired last night and all the other young people were playing board games and I had to have a small hissy fit. Thankyou for your kind replies.

I totally agree on the life stealing... its horrible what this does to our bodies.. I raised 4 kids.. and now that they are out on their own.. here I sit.. or lay.. two heating pads.. pain meds. and baths.. etc.. so yes hun. Im sure this is so bad for you so young..

I didnt get this til my late 40's... and boy it sure has progressed.. along with diabetes and disk disease.. days are not fun..

I know also I have done alot in my life.. I do feel for you younger ppl getting this crap!!!... blessings hun.. :)

Yep, yep. You're preaching to the choir here.

First of all, I want to say how sorry I am to hear that you are suffering so much. Then I want to let you know , I totally understand. I am 51 and have had FM since I was 11 years old. Not a fun disease. There are days that I feel like staying in bed too, because that is all I really can do. I am a Christian, so I understand how you are hurting from the fact you cannot be that missionary that you desired to be. However, may I encourage you? There are things that God wants you to do even in your pain. For years I prayed that He would remove this from me. For almost 40 years He has CHOSEN not too, but I have found that there are things that I can do to bring Him glory even in the pain. Everything that I do, I do by the grace of God. His strength is definitely perfect in my weakness. It sounds you may be in more pain than I am , and for that I am truly sorry, but know that I will pray that God will send you a ministry where you can do something that will glorify God, God equips us to do what He calls us to do. HE does not look at how much we do. May God touch your life, in a very special day today Nadya.

I know and I still work 40 hour's A week but that's pretty much all I do and that's not by choice.SSI would cut my income in half and I'm one of those people who is one pay check from being homeless.I can't go to church anymore.I can't afford the insurance coverage they offer at my job.When the premium's with the deductable went up I would have been homeless paying for an insurance I can't use anyway because of the deductable.I've been trying to get A job working from home.Any idea's?I'm alway's networking.I tried to go to Vocational Rehab but I was told since I work 40 hour's A week and not on SSI they won't take me.That would mean I would be homeless before they would take me.I try to keep up A strict routine like I'm in bed every night at 7PM.

Nadya,
Sorry you are hurting. Don't give up your dreams just yet. You will probably hurt no matter how much or little you do (sorry.) So... you might as well become a missionary or start with a smaller goal. I have pain every day. I control it with opioids. (Maybe you need real pain meds, not just a muscle relaxer.) I will still climb Vulcan Baru in Panama this year. I am too stubborn to give up!

same here... all my friends are much older too. seems like i only get along with that age group. i have so much more in common with them then my own age group, sad isn't it?
btw, i'm 28 and have had this since about 22 yrs old. actually, my last rheumy visit he thinks i may have had this a few years before that. i'm not really sure.

and for errands, ONE is all it takes for me to have to quit for the day. i'm down for the rest of the day after that. can't STAND check out lines either!!!

so many times i wish all of us on here lived in a closer range, than we wouldn't have to feel so alone. we could hang out with each other instead of worrying about the rest of the world of "normal" people. i keep my illness to myself mostly. lot of my friends don't know i even have this shit. anyone under 40 yrs old don't really know. they are too active for me to tell them and they constantly wanna go do things together. i just make excuses and blame it on my back injury. i figure they don't have to know the whole story. but sometimes i think maybe i should tell them, so that when i'm down and can't leave the house maybe they could come visit me. but i always end up backin out of telling them for fear that they will pass judgment (since i LOOK FINE).

recently i decided that maybe i should make more friends... and try to find some near my age that would understand. but it's very hard to find anyone like us. my bf keeps complaining that my friends are all much older than me. but what else am i gonna do???? better to have some friends than NONE. but he doesn't think that way. whatever. he is my age, btw, and sometimes i wonder why i don't get along with him so often. i think it's because he IS my age! DUH!! lol

anyways... i've rambled on enough here... i hope you don't feel so alone anymore. you are NOT alone. there are enough of us on here that totally feel you. take care for now....