Help

General
21

Dearest Kinsey,

You are not alone, we are now over 800 strong in membership to this site. Though we are not always here at the same time, we are with you and have done and am doing the very same thing!

One good thing my Rheumatologist did was give me Valium to take at night to relax the muscles, my GP has to be given credit for first giving me Xanax, but the Rheum liked the Valium better, said it stayed in the system longer. Please know that I have tried many muscle relaxants, this works better for me.

I hope that you are getting good medical care and will feel much better soon! Please never think that you are alone!

Hugs to you and all,

SK

In addition, I drag an office chair around the house and sometimes when I go away just to have a chair I can tolerate, though I bought a good sofa, i usually end up laying on it, because I cannot sit on it long, and am nearly homebound because of the intractable pain caused by riding in the car! Believe me sister, I know! I am with you!

22

Sk-thank you so much for the kind words! I have been prescribed valum however I rarely take it but
Lastnight I was miserable & ended up taking one for the first time in awhile & it helped better than anything I have taken in a long time!! So I most def will be trying it again tonight to see if it helps me as much as it
Did lastnight! I’m def trying to stay strong @ realize that Im not alone like I thought I was all this time! All
Of yalls sweet comments have already uplifted me in so many ways! I appreciate them
More than y’all will ever know! & as far as a sofa I can barely sit on my & I’ve had my church purchase me a
Recliner that’s the only way I am Able to stand sitting for a hour! I’m gGoing to try to recliner & it it helps alot I am going to consider getting one for my house that way I can be up with everyone at least to watch tv! Thanks again!

23

Thank you so much. I am going to look at the resources you provided. Unfortunately, I can not take,Benadryl or any antihistamine as they make me crazy, have weird thoughts, hyper (the opposite of most people I know). I now have some more questions to ask my doc. Again, thanks so much!

24

Dear Rachel,

This is so well said. For all you do for all of us, please know that we are also all here for you, for those bad days and painful, sleepless nights.

Hugs to you,

SK

25

Hi Jo,

Your symptoms sound a lot like dysautonomia. When I lived in Texas and had fainting episodes many years ago, the docs reported me and,I,lost my license for two years. It was a year before I got diagnosed and put on meds and then another year mandated by law before I could get my license back. Different states/countries have different reporting laws. I have not been reported here in Alabama because the neurologist said he didn’t have to by law but I don’t drive because of the dizziness and balance issues and the meds aren’t helping so far. Waiting to see a specialist and hoping that will help. Hugs. MB

26

Hello sky fish,

So nice to hear from you, so sorry you had to go through all of this, I don't know why this all has to be such a long hard journey, I understand protocol, but really, if it were the big C, we never would have made it!!! That is not meant to be unkind to anyone, but I have known so very many cured of that in my 7 years of debilitating struggle! I surely am pro medical care, but lets get busy and be more effective and efficent in a much shorter amount of time!!!

Hugs to you my friend!

SK

27

Kinsey,

Hi, you are so young to be suffering so much. Not that Fibro discriminates! It attacks us all! We are all here in the group, we can relate, as we (well) most of us have the same problems. Some maybe more than others. But, we all have our good and bad days. Believe me....you are not alone.

Sounds like you're having a bad day/nite. Insomina attacks us all. Better days will come. If I can get 4 hours straight, it's a major accomplishment. Then, I sometimes cat nap throughout the course of the day. When you cannot sit, stand or lie down in comfort, do some stretches. Have you ever tried yoga? Pain wise, I used to be where you are now.

I kept fighting it. I tried the stretching exercises. Sometimes, they helped, and well sometimes they didn't. I didn't give up, and I kept trying. I bought a book on "Exercises for Chronic Illnesses," I read it. Then, I tried some of the ones that are in the book. I believe in working through your pain, you can use exercise, take supplements, resting is the best medicine. And, basically, if you can find something you are passionate about it, and doing it. Get your mind off the pain.

I'm a beader, I make bracelets, ankle bracelets with the healing stones (hematite + crystals) and I sell them to people like us that need them. It's my passion. Find something you like doing, and do it. When I'm in pain, if I am beading, I can get the creative juices flowing. It's just a suggestion. Take control, be strong and try to work through the pain.

I know there are different degrees of pain, I kinda play a game with myself. I call it mind over matter. My pain level has to reach 12+ before I will break down and take pain meds. I will try a whole slew of things before I reach that point.

I don't want my fibro to control me. I fight it all the way! I have two friends that gave up. One is wheel chair bound, and the other is on a walker. That's not me, I've got to much living to do. I'm not giving in to it.

I pray, I read my Bible for wisdom, I ready other books, I get on my computer, I walk in my house, I meditate, do yoga stretches. I do whatever it takes to get me through....within reason, I do it. Whatever you do, don't give up!

28

Go Teresa, you are my kind of gal!

29

Teresa-thank you very much… I do need to find something im passionate about I think that would help…I used to exercise often but it has just became so hard for me to do…I don’t want fibro to control me either… I’m just taking it one day at a time thank you for the suggestions

30

I hate to see you guys start out so young. The disease is terrible whatever the age, but I would not wish it upon any of our youth for anything. I an only wish you the best of what life has to offer.

Fans, ceiling fans, cold air conditioning, uncovered shoulders, bother me. My ear hurts a lot. I wear a jacket, sweater, or both year round. I live in NC.

We hope someone is picking up the '57 Chevy tomorrow so we are that much closer to moving to the beach.we hope that helps my fibro.

Good luck hon.

31

Hey deb, a neurologist recommended benadryl for me for sleep to, but now that they know I have Sjogrens, which dries you out like the desert, the Rheumy said NO< NO< NO!! But at the time I liked it, helped the allergies, cleared up the sinuses and you slept like a ROCK!! LOL!!

We are so nice to have you with us, it is surely not a friendless world here! We are glad to have you with us! There are others here with EDS, if you go to the top of the page on the left where it says discussios and type in EDS or the full name those discussions will come up for you! Works with anything!

32

Trikcy, sorry you have to sell the '57 Chevy (siiiiiigh) but moving to the beach sounds wooooonderful for the fibro pain! I hope you were able to sell the Chevy (sniff, sniff) and can now get packing.

I'm going to see how I do this winter and think things through after this. However, not having health insurance anywhere else outside of my home state, Massachusetts (Gov. Romney's version of Obamacare has been nothing short of a miracle for me,) makes moving pretty tough.

Let us know how you made out, tricky!

33

Oh that is great tricky! The beach is a goal of mine too, but just the car ride part, I am about 5 hours from Ocean City MD if there is no traffic, but riding is my biggest problem with my back, still haven't given up, I always thought salt water would cure anything, but cold water may not be your thing either, I know about that, I have Raynaud's Phenomenon, so I know about always being cold, I just bake my poor husband!

But walks along the beach, hearing the waves, awesome! Just don't forget us, girlfriend!

Hugs,

SK

34

No! I am updating my iPad to wifi and not carrying wifi
in the house. No way would I forget my therapy and friends. It will be hot on the SC coast. We just have to get this guy to stop showing us houses 10 minutes away from the beach.

35

Kinsey, there's nothing about your problems that would surprise us because we all have these unusual symptoms in common. We understand and hear you!

Could you print up some things for people to read? I wrote a paper on it . . the only thing I'm missing are the personal stories. Posted it on Facebook. I think I'll send it here as a discussion.

Love & hugs,

Katha

36

Oh the beach sounds awesome! I am actually going to be headed to gulf shores, Alabama on Tuesday of next week & I can’t wait to see how it effects my body! I sure hate that you so many know how I feel! I wouldn’t wish it on anyone! Thanks to all of you for the sweetest comments! Xoxo

37

Katha-I’m so glad their are so many of us who are just whiling to take the time out to listen! Thank you so much! I now know I am NOT alone!

38

Wow I’ve never heard of dysautonomia but it sounds like what I have. Kinsey, you’re not alone. Reach out anytime you would like to talk!

39

Thanks MB,

I really appreciate the info. I will mention it to the doc "off the record" and see what he says. I don't drive hardly as much as I love to now because of these symptoms. Driving is one of the best painkillers for me as it takes me away from the house and takes my mind off the pain a bit, especially if I have a race on lol. So I am really not keen to lose my license, and I also need it to work as a carpenter etc.

Sitting hugs lol

Jo

40

So true there! You know your limits and keep pushing just a little at a time. It does take a long long time to improve too if you let it slide just for a month. But the upward battle is so worth it. It makes life just that little more satisfying. Do your best, thats all we owe ourselves.