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Anyone with Fybromyalgia? Anyone with Fybromyalgia?

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Unread 08-18-2004, 12:03 PM
Anyone with Fybromyalgia?

Here is an example of how i end up. I had to go to an evening work function last night involving standing and schmoozing with people for 3 hours. I stupidly wore dress flats, instead of my usual Fugly Shoes with Orthotics.

By 8pm i was in so much pain i could barely hobble to the car. my back, hips, knees, and feet felt like someone had taken a hammer and smashed it right on there.

when i got home (after a 1 hour drive) i " gave in" and took one of the stronger pain pills my dr recently prescribed. Pain all night long, esp hips and feet.

This morning, still limping, and bad lower back ache leftover from last night.

Oh the joys of chronic pain!!!

Fluffy Lemur
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Unread 08-18-2004, 12:20 PM
Anyone with Fybromyalgia?

Ouch Fluffy......I am so sorry you are in pain. Sunday, when I had a flare, I kept telling myself that I have had this before and it got better.......and I will get better again. My heart goes out to you and hope you are/will feel better as the day progresses.

Was trying to find this article and I fianlly did. It was origianlly written for someone with Lupus but I find it also applies here. It is very interesting to read:

<admin. snip - here is a link to where the article appears in our Resources directory: >
Unread 08-18-2004, 01:35 PM
Anyone with Fybromyalgia?

THANK YOU for finding and contributing this wonderful article. And thanks to the author, whoever that might be!

My best friend for the last 25 years has rheumatoid arthritis, and we understand each other's strengths and liabilities very well. The problems come if you try to explain your illness to others - family or not. The problem here is, they don't often care enough to ask the question the author's best friend asked -- How does it feel to have --- .....?

Bee Charmer
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Unread 08-18-2004, 02:15 PM
Anyone with Fybromyalgia?

hi everyone
i too suffer from fibromyalgia, arthritis, RSD, on top of my "ovarian remnant syndrome"
in my case, the RSD affects me alot worse than the fibro, but heating pads, hot baths, and tubes of icy hot help me get through
as far as medicines go i feel that going to a pain specialist is much better than trying to get your family dr to treat this
my pain dr is my guardian angel, she understands my pain and isn't afraid to treat me for it, the only thing that will even put a dent in my pain is ms contin (morphine) and unfortunately it won't do anything for the ovarian remnant pain

hope everyone has a pain free day!!!!!
thanks for letting me vent

Unread 08-19-2004, 02:40 AM
Anyone with Fybromyalgia?

I too suffer from FMS...mine was dx'd over 4 yrs ago and thot to be bought on by the trauma of my Hyst and subsequent 2 surgeries for complications :-( The pain & numerous symptoms this syndrome can bring about are unreal. I recall the early days into it I could barely get out of bed..every inch of me ached, I was so stiff I couldn't make a fist..I would cry for hours not knowing what was happening to my 30 y/o body Like someone else I lived to control the pain & make it home from work into the bed where honestly believed some days that I would die...I didn't understand how one could endure so very much pain that had no cure
My PCP gave me a tentative dx with a referral to a Rheumy...I literally bawled as she described what I was feeling & why. I was told to sleep, exercise & keep the stress levels low...uh yeah sure...& I would feel better but I didn't. I sought out massage therapist, PT, aqua therapy, had trigger points, more meds than I can count, tried the cure-alls being shared on the name it if it said it worked I was willing to give it a try, lol. I continued to work full-time, crazy hrs and took pain meds, muscle relaxers & antidepressants it wasn't until my PCP Dr suggested that I go on a leave of absence thru him to rest that I realized what a toll work was taking on me. The relief I felt after a few short weeks off was unreal...our body has limits with this syndrome, ones that went unrealized for the longest with me. I still rely on Pain meds but mostly for other lingering unresolved pain issues to help me thru but the pain is not first & foremost, filling my every waking thot.
I think that its a combo of things for different people...what helps one wont necessarily help the next...for me the biggie was the amount of physical stress I was placing on my body coupled with other factors that just came along with that territory for me.

I still have my bad days but the flares aren't as intense nor severe, I find the summer months are much kinder than the winter and sleep is a must! Also finding a Dr who understands this complex syndrome to work with you in finding that right mix of things....

There are literally hundreds of gals that have passed thru here with this syndrome...knowing your not alone in this battle was of a big source of support for me also

Thank you for posting & sharing your story...I do wish you better days ahead, hopefully ones with some relief in sight
Unread 08-19-2004, 08:18 AM
Anyone with Fybromyalgia?

I think my major question is how those of you who work full time and have a family do it?? I "only" work 4 days a week, but have 2 kids at home. Most days it is all I can do to get to work, function and get home. From 5 pm until bedtime is absolutely miserable for me. There are time that I just want to lock myself in the bedroom and cry. I've yet to find any amount/combination of medication (or anything else for that matter) that makes it more bearable.

Financially, me not working is out of the question. Then again, raising my kids and being there for them isn't optional either. We are in the process of moving right now which is about to be the straw that breaks the camels back. Once we are all moved in, I think things will be better (no driving back and forth to work, able to go home and rest at lunch, etc.). But, in the meantime, I'm having such a horrible time coping.

And ya know, I use to think I was just a lazy, wimp!
Unread 08-19-2004, 09:22 AM

Hi There:

I have had FMS for over 9 nine years now and had a TAH at the end of July. Over the year s, I have tried every drug and trial practically known to man to get some relief. I ended up having to quit my job, I am now a freelance writer part-time, and had to start my life over.

I will tell you what has helped me to get through these last few years with less pain and problems. BYW- my FMS started after I was hit by an 18-wheeler.

The first thing has helped me more than anything is faith and prayer. Without that I would have lost it a long time ago.
The second thing is finding the right combo of drugs to help with the sympyoms. I used to not care for natural things but I am slowly changing my mind. Have your doc put you on the right SSRI and SSI in addition to possibly putting you on some thyroid meds. An example would be taking a combination of Flexeril and Zoloft, becasue they work together to control the release of certian pain checmicals in the brain. Also you could try several medications such as Neurontin and Topomax that are normally used for people with neurological problems and RLS. They do help some people with the pain once you get past the side -effects.

The above suggestions are for if you are in alot of pain on a constant basis like I was. You need to research all of this stuff carefully and get a doctor who will really listen to your needs and is knowledgable about what's out there for FMS. ( I know that can be harder than you think) I have also tried Vioxx to reduce swelling, but it doesn't help much with the pain. Youcan' take some of the stuff too long for it can cause other problems.

Since my TAV I have been doign the following and it appears to be really helping with all of my pain and fatigue in general:

Right after surgery I started the Maker's Diet. This is eating mostly organic food of all kinds. I am also taking their vitamins and I have noticed a good increase inmy energy level andmy pain sensitivity has gone down. I am also getting better sleep than before. I also now walk 20 minutes in the morning and 20 minutes at night ( I have treadmill) And will start adding ab exercises soon.

We have to keep moving because with the scar tissue that forms after surgery for someoine with FMS it can be alot worse than normal. Anyway that's a little of what I do. I hope this has been some help.
Unread 08-19-2004, 09:24 AM
Anyone with Fybromyalgia?

I worked 50 + hrs per week and the last yr & half of it I was raising my 3 kids solo I couldnt do it..I was like you & it was dragging me down so bad so something had to give & it couldnt be me or the kids so it was work! I held a high position, been there 16 yrs it took alot for me to accept that I couldnt do it anymore....
Just dealing with this condition alone is enough to wear you out without even factoring in the other stuff

Unread 08-19-2004, 09:45 AM
Anyone with Fybromyalgia?

I don't have children, but as it is i feel guilty about not getting my doggie enough exercise (like i think he should be in flyball, frisbee etc)

My job, fortunately and unfortunately, is pretty much sedentary: working up budgets and being on the computer, doing some trainings, research etc.

I could NOT manage w/o my DH who does 98% of the cleaning, cooking, and helps me with the shopping. He is an ANGEL!!!!!

I can't imagine how it would be to be on your own with kids to care for. You are very strong, who do it.

Fluffy Lemur
Unread 08-19-2004, 01:17 PM
Anyone with Fybromyalgia?

I do have a wonderful DBF who helps out as much as he possibly can and he never complains when dinner isn't on the table or the house is messy. I am very blessed in that aspect! But, the financial position we are in right now means that he is working very long hours and is exhausted himself.

My job is a desk job too, but at times I wonder if it wouldn't be easier on me to be up and around a little more.

I guess the bottom line I just wish I had a or all of us!

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