Profile

Hi I keep trying to do my profile and now the profile tab is gone so here are some facts about me :

I am 57 years old and married lady with no children but a beautiful beautiful cat named Patty. I have had the symptoms of fibromyalgia for a few years but I was just diagnosed with the disease in August. This is because of all the testing!

What do you think about Lyrica? I take 50 mg 3 xsa day. Some days I don’t need any when I just have all over soreness , but when I have what I call the Pickerbush or hot needles the Lyrica does not seem to help at all . Do you all know what I mean by needles needles ? Anyway I cannot hear a lot and get support from all of you I just couldn’t figure out how to do that profile but here I am hello

Hey PAtty5!

I have been dealing with fibro for more than a few years now. It seems to change every day. Like I just get a handle on what has been routinely happening in my body and up pops this new torture.

A little about me - I am 60 years old and have been married to the same lovely man for 40 years now. We have 2 adult daughters who are self-reliant and oh, so smart! The older daughter got married in August 2017 so we have a new son-in-law as well. We had a pug for 13 1/2 years and she was as much a part of our family as all of us humans. It nearly killed me when we had to put her down. She was in so much pain & it was too selfish of us to allow her to continue to suffer as she was. But that is the reason for my User Name.

I take a number of medications for several illness and conditions. For the fibro, I have been on Cymbalta & Lyrica. I recently asked my PCP to help me step down from the Lyrica. It helped with the constant pain, but whenever I would run out, or have to wait for delivery of a new refill, I would be so violently ill for days after I was able to start taking it regularly again. I just didn’t like to feel that I was that dependent on any medicine. So, I have been off it now for 3 months. And yes, the pain has come back with great intensity. I am trying to find a local class for Yoga or Tai Chi that I can start going to to hep manage the pain. Unfortunately, I still work fulltime & the classes I can even find in my area are during the day which doesn’t work for me.

I think I have an idea of what you are referring to when you say the hot needles. I get that off & on. Not a great deal helps. I can’t take much OTC pain medication due to ulcers. I also have issues with my liver & a lot of the OTC stuff messes with that, too. I have recently tried using a lidocaine patch with some success, but we are all different & what works for me, may not for you & vice versa.

This may or may not help. Welcome to the site! Always run new treatments, even supplements, etc. by your doctor as so much can interact in a negative manner with one another. Best of luck!

LovePug (Patti)

Dear Patti,
Hi! I just woke up because I couldn’t I couldn’t sleep and I email . I was so excited to hear from you . I have been married to the same man for 29 years. He is very supportive, but I don’t think anyone can really understand unless they’re going through this also. It’s a very isolating disease . I’m so happy to have someone to talk to about it. I take Lyrica and also Adderall RX and Prozac . I think the Adderall RX does help, but the Prozac does not seem to help at all and the Lyrica doesn’t really help with a what I call “Pickerbush” attack.

Do you have a pug ?I think you’re adorable . My nephew has 2 of them .

My husband Tommy just woke up . He is reminding me that I have to be at work in the morning . I will write more tomorrow hoping hopefully you’re having a good night sleep Lisa

Good Morning, Lisa!
I hope you were able to get some sleep last night. My husband got me this really great pillow for Christmas to help me sleep. I had great success with it until the last 2 nights. I used to sleep with a body pillow but had seen this one & asked him to get it for me. It is similar to a body pillow, but it is shaped sort of like a horseshoe. You sleep in between the 2 sides and use the top for your head. It helps give me back support and a support to put between my knees. It worked great until night before last when I started tossing & turning again. I have a lot of pain in hips & knees & seem to always be trying to find a more comfortable position.

We used to have a pug. We had to put her down 12 years ago in March. It seems impossible that it has been that long. I still look down at my feet to make sure I don’t step on her or trip over her. I was the one she always stayed near. Unfortunately, a few years before she got so ill, I learned that I was allergic! My older daughter, Jessi, was so worried that we would get rid of her. We couldn’t do that, we just couldn’t let her sleep right under my bed anymore. She slept very night right outside the bedroom door from then on. I miss having a dog & look at them on Pintrest quite often, but my first choice would be a pug & I just can’t. I have also started looking at Aussiedoodles - a cross between an Austrian Shepherd & a Poodle. They are more hypoallergenic & don’t shed like a pug would.

Well, I have prattled on for long enough this time. Yes, I would love to stay in contact & talk about our joint problems/solutions with fibro. Hope you are having a good day - as pain-free as possible.

Patti

Hello there Patty5 and LovePug!

Seenie here from Moderator Support. We always love it when members strike up friendships in the community: we’ve made more than a few friends here ourselves! Did you know, though, that you can message each other privately as well? Patty, all you have to do is click on LovePug’s avatar (butterfly in green circle) and then click on the “message” icon, and that’s a private message. The screen looks very similar to this one, with the exception of a grey envelope icon that eventually appears, and the reply button which says “Reply Privately”.

Patty, you can edit your profile all you want by going to your avatar (P in a pink circle) and then clicking on it, and then on the gear icon. It’s there but small. That will take to you a page where you click on “profile” and you can edit to your heart’s content.

When you said that the profile tab was gone I got a bit worried. Today I was editing some things in the member profile part of the software, and I thought I’d made a bad mistake. What I did was switch to an administrator’s view of Patty5’s account so that I could see what you see. To my relief, your profile is still there. Then, because I had added “Country” and “Region” to everyone’s profile, it wouldn’t let me exit Patty5’s profile until I filled it in. I tell you, this volunteer gig is its own punishment! LOL So I made a wild guess that you were in Ohio, USA. Hope I was correct. If not, you will have to change it, or you can tell me what it should be.

We’re glad you are here, and of course we hope that you are too. If you have any questions or problems, just ask away.

All the best to you

Seenie from Moderator Support

1 Like

hi - i have had fibro 35 years. i did TRY Lyrica but i gained 19 pounds in ten days. The doctor told me i could not just quit or take it a few days and then not for a few days, as it doesnt work right then. for ME it didn’t work, but i have known many who use it. I think everyone is different and have to find what works best for you.

Hello thanks for your feedback . You’re right it doesn’t help me one did not one iota I don’t know what to do about it because it seems like it’s the only thing available I tried gabapentin for a different condition and I didn’t think that did anything either
Thank you for letting me know that I’m not the only one out there that doesn’t get any help from Lyrica. I wish you a pain-free night and day tomorrow thanks Lisa

Hi Seenie!

I tried to reply to this somewhere else but it didn’t go through. That note you wrote me just text me absolutely love you thanks so much for all you do you volunteers are a godsend . The site is so important to me.
Thanks again very much. Lisa

Hi there Patty, thanks for the lovely message, and we always appreciate it when people say thank you. There are quite a lot of volunteers behind the scenes: there are moderators on this site, and then people like TJ, Christina and me who oversee activity on the larger Ben’s Friends network.

We all know how much these communities mean to people, because we all have chronic (and rare) diseases ourselves. The feeling that we are not alone in coping with our disease challenges, and appreciated means a lot to us!

All the best to you. Thank you so much for sharing the love.

Seenie (and the rest of the Ben’s Friends team)