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Super Contributor
Posts: 1,342
Registered: ‎10-13-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Good morning, everyone! I just spent a half hour addressing personally everyone who posted on this thread, and then my post just disappeared! {#emotions_dlg.scared} What the $#%&@! I just can't post it all again right now, but I read everyone's posts and will be back to comment more later.

Everything is status quo here...still sweating, still have the fractured rib, but the doc sent me to physical therapy for the spasms.

Got to run now, but will TTYL!

Madisson

Some people do drugs. I do shoes....Celine Dion
Honored Contributor
Posts: 8,440
Registered: ‎03-10-2010

Re: Fibromyalgia Sufferers...A Place to Meet

I was diagnosed about 8 years ago, and the ladies who participated in that long ago fibro group here were an enormous help to me. I say thank you to every one of them, and if any are still posting here I hope you are feeling the best possible that you can. I have been very VERY lucky. Because I've lost a lot of weight, I'm much more mobile than I was, and keeping yourself moving, no matter how little, really is important. Please keep this post going, and when it gets too long, start another.
Super Contributor
Posts: 1,342
Registered: ‎10-13-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Serenity, thanks for suggesting the CALM. I'll check it out, as sometimes I just gag on those magnesium tablets.

Ford, I'm sorry to hear that both your daughter and yourself are having issues that sound like fibro or CFS. Both are so similar...both have exhaustion and pain, until you find the proper medication regimen. The stressors that your daughter is going through can certainly aggravate the situation big time. We get worn down from stress, and we hold our muscles more tightly. I know somewhat what you are going through with the RA. My father had RA and took 5-10 mg of prednisone daily...and more during a flare up. I just got off 30 mg of prednisone a day for 5 days for several conditions that were going on in my body, and wow...did I have a time on that drug. I poured sweat like a faucet the entire 5 days. I was like a sweat machine. It's a great drug if you really need it for something acute, but it can really cause some side effects.

Mishell, sounds like you and your husband have been going through a lot in the past several years. I'm so happy to hear that he is doing better now. Now we just have to get you doing better! I hope your doctor gives you a chance to get off the SSRI or SNRI drug and maybe try the Gabapentin again. I'm just experimenting with it to see how well it will control my pain. Presently, I'm trying 1800 mg a day. We shall see. I'm hoping that once I'm off the Cymbalta, my breasts will "deflate" some on their own. IDK!

Some people do drugs. I do shoes....Celine Dion
Super Contributor
Posts: 1,342
Registered: ‎10-13-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Okiebug, you and I were probably a couple of the first to be diagnosed with fibro. I was 35 when I was diagnosed and am 65 now. They didn't know what the heck was going on. They told me I had bursitis, then trapezius muscle syndrome, then basically that it was all in my head, and finally we got a physical med and rehab doc in the area who knew after all the blood work what it was. Hope yours is doing better now!

Windycity, sounds like fibromyalgia might run in your family! I never thought of an inherited component to it. I'm sorry you are having such a tough time. My cousin just had that bariatric surgery. She had to delay it several months while she jumped through a lot of hoops too. When I saw her last month, she was definitely looking thinner than she had been, so it must be helping.

IdoraLiz, so sorry to hear that your family is not real supportive of your fibromyalgia. That is actually very common. When I first came down with it, my friends were not supportive either. They would just tell me to take a shower, get out of bed, and get moving on my days off. After dragging myself to work through the week, the last thing I wanted to do on my weekends was go out shopping with friends. It is too bad that your husband doesn't want you to get another dog. Our furbaby friends are actually good for our health. Have you ever considered a kitty or an older cat? They give you the same unconditional love that a dog gives...only with a lot less work. Just feed them twice a day and clean the litter box once a day. There is a kitty out there just waiting for you to adopt it!

Addiegal, sounds like you and I are on similar diets. I try to eat high protein and low carbs too...with some protein at every meal. It really helps me keep my weight down.

Some people do drugs. I do shoes....Celine Dion
Super Contributor
Posts: 1,342
Registered: ‎10-13-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Sneef, I've never tried the Savella. I think it is another SNRI drug like the Cymbalta I am on. It might be very helpful to some people with fibro though, if they are not getting the severe perspiration and breast enlargement like some of us are. Thanks for mentioning it!

Violann, I'm happy to hear that the old fibro group was so helpful to you. It is so great to be able to have somewhere where we can share information and motivate each other to keep going...especially when we have one of these "mystery" illnesses. I'm happy that the weight loss helped you. I've got 10 lbs to drop, and I'm hoping that it will roll off more easily now that I am going off my Cymbalta. I'm especially happy to hear that you are more mobile now. I need to exercise a little more...just walking...as I know it is good for fibro, depression, arthritis, muscle strength, bone strength, and cardio! Now, why am I not outside walking??

Some people do drugs. I do shoes....Celine Dion
Super Contributor
Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Hi to all...I was out in the sun today and had some pool time. It sometimes knocks me out, but today it was really rejuvinating. Moving in water is easier and I actually get some exercise.

Madisson.. I have been on Prozac for so long, I really hope that if I can off of it that my breast side goes down. That would be incredible. I wonder if it matters how long you have been on the drug. And, I am so going to discuss the gabapentin with my Dr. I hope we both have the desired effects of getting off the antidepressants. I wonder if my night sweats are related to the Prozac or just another symptom of the Fibro.

Idora Liz... I totally agree with Madisson about getting a kitty. They really do take care of themselves. I was so ignorant when it came to how amazing cats are until we got our baby. My kids were young at the time and I was really afraid of cats. I grew up with dogs. She is my baby. She and my now adult kids grew up together. She is so social and loves being with the family. All that stuff about them being aloof is just so not true. The cuddles and love and sweetness is the best. So maybe that would work for you. Just feeding and the litter...that's it in terms of physical commitment on your part.

If anyone has any suggestions on how to function in the morning (I am in tears from the discomfort) I would really appreciate it.

I hope everyone had a good day!

Michelle

Super Contributor
Posts: 325
Registered: ‎06-09-2014

Re: Fibromyalgia Sufferers...A Place to Meet

Madisson, I was on 2700 mg. gabapentin for a couple or so years...I did get some side effects that were troubling but when I weaned off the neuropathy I'd had was gone! And I was on Lexapro along with the gabapentin and the tapering off the Lexapro was the hardest of all! So, don't give up, just give yourself time between tapers to adjust.
Super Contributor
Posts: 2,007
Registered: ‎04-05-2010

Re: Fibromyalgia Sufferers...A Place to Meet

Madisson, it was sweet of you to acknowledge my post, I do appreciate it. I had a very progressive dr who actually stopped practicing shortly after that to go back to teaching - he taught interns how to work with patients with undiagnosed diseases, so I was very fortunate.

At the time I had a 3 mo old and a 4 yr old and when the fibro first hit it was so severe there were days I couldn't walk. I spent many days on the floor with the babies because that's the only way I could care for them. I was tested for MD, MS, lupus, myasthenia gravis, brain tumors, parkinsons. I finally found a rheumatologist that did a trigger point test on me and I got the novacaine trigger point injections. They were such a relief for me and calmed my nerves and muscles down enough I went into remission for several years.

About 12 yrs ago I started having symptoms again, and found out I had taken SSRI's for so many years I had developed a toxic level of serotonin in my body. I now have to take meds for Parkinsons and narcolepsy, and with pain meds I am able to live a close to normal life.

4 surgeries and 2 major illnesses and the passing of all our parents within 3 yrs threw me into a major flare a couple of years ago. During this last flare, my GP of 25 yrs retired and in the process of finding new drs, I was "fired" by three doctors who didn't want to be bothered by my complicated symptoms. One pain management dr told me that since I couldn't take the meds he prescribed (they landed me in the ER), he labeled me as a difficult patient and he didn't have time for people like me. I'm sure others have dealt with drs like that. I now have a really good team of drs - my neurologist and pain management dr work on patients together. I was scheduled for a repeat sleep study, but have been dealing with a tick borne disease that has put me to bed for almost 3 months. I'm gradually getting over that, and hope I can resume aqua physical therapy in a month and have started back with my beginner, modified Tai Chi classes. Tai Chi has been great for me because it stretches my muscles and calms them.

With fibro, what affects others for a week takes us a month or two to get over. My husband has been very understanding and supportive. Both my sons are also. But, I've had friends stop seeing me because they "didn't know what to say".

Again, thanks for this thread and for everyone who have posted on it, and if you've read this far, thanks for reading this long post.

Super Contributor
Posts: 1,342
Registered: ‎10-13-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Good morning, everyone. Life has been crazy the last couple days. Everything seems to happen at once! The garage door went off track yesterday, and DH was having car trouble at the same time. So, I had to call a company to repair the garage door and follow DH to the car dealer so he could get a ride home while they repaired his car...then later, drive him back to the dealer to pick his car up. The dealer is about 45 miles from where we live. That threw me into orbit, as we are expecting company next week, and I'm trying to get three rooms prepared where they can sleep.

Addiegal, thanks for the advice about tapering off my Cymbalta. I want to taper off quickly due to all the perspiration, but I guess that would not be the wisest thing to do. I used to be on 2700 mg of Gabapentin a day without side effects, but I went up slowly. Also, I'm on a different medication regimen now...so that makes a difference too. Currently, I'm on 1800 mg.

Okiebug, I am literally shocked by some of the experiences you have had with doctors! Wow...that seems so unprofessional to drop a patient. I know that a physician can refuse to take on a patient if they do not think they can help them, but to drop a patient in mid-treatment is just wrong. In order to do that, they are legally supposed to write you a letter explaining why they are dropping you and also refer you to another doctor who may be able to help you. Those tick borne illnesses are so awful. We have a lot of Lyme disease around where I live (in a woodsy area). I went through treatment for Lyme disease a few years ago. Let me tell you, I was flat in bed! I kind of wonder if a lot of us are not suffering from seratonin syndrome. The doctors don't really check. They just keep giving us more drugs to increase our seratonin levels. I was amazed that you mentioned the Tai Chi, because I have been looking into doing Tai Chi. I'm happy to hear that it is helping, as online it looks like just movement with no stretching...and that made me wonder if it did any good. I'm sorry to hear that you are dealing with other issues beside the fibro. The fibro is bad enough! I'm happy to hear that the pain meds are allowing you to live a fairly normal life though. I'm sorry to hear that your friends are not more understanding. That is so common. Maybe you could give them a call when you are feeling pretty good and suggest having lunch or something??

Mishell, isn't aqua exercise wonderful? I'm happy you have a pool where you can work out. We have one too, and I jumped into it last night to help loosen up after a stressful day. Also, I'm trying to prevent a flare up with company coming next week. I'm going to try to work in time for a massage this weekend. You know what helps me in the morning is actually doing some gentle stretching before I even get out of bed. Then once I'm out of bed, I stand by the side of it and reach for my toes and try to gently bend side to side. After breakfast, I do some additional stretching. You might want to start with trying the gentle stretching in bed to help loosen up. Just work your arms and legs and do some range of motion exercises with your head. Hope that helps some.

Hope everyone has a great day! Going to be fairly hot here...near 90.

Some people do drugs. I do shoes....Celine Dion
Super Contributor
Posts: 325
Registered: ‎06-09-2014

Re: Fibromyalgia Sufferers...A Place to Meet

Madisson I didn't start on 2700 mg. either...I'd taken it before and gone off and then went back on and gradually worked up before being told to take the 2700 mg. It was due to taking it for a longer time that caused side effects. I would guess not many will get the side effect I did...if it is working for you great.