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Post Op & Fibromyalgia Post Op & Fibromyalgia

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  #1  
Unread 01-06-2008, 08:22 AM
Post Op & Fibromyalgia

Hi Everyone! I guess I am on the cusp of being shunted along to the next board but I will use my status as a 6 monther to post once more.
I had my TAH July 4th and I guess as surgery goes all went well. Although my ovaries have not completely recovered and still losing my hair and have night sweats and anxiety. This week I will ask my Dr to give me some assist with HRT to get over this stuff.
My issue now is chronic fatigue and pain... and leading to a diagnosis of Fibromyalgia. Are there any sisters out there that have had a a flare up since or because of the surgery and their recovery? I guess my frustration comes from having a couple of months of rest and relax and pain medication and it really hitting me what it is like to be "pain free" so to speak.
I could use someone who is going through this also to know that I am not crazy.
I know my thread might end up on another forum but hoping someone might help here. Thanks for any input
Donna
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  #2  
Unread 01-06-2008, 08:33 AM
Post Op & Fibromyalgia

I don't suffer from Fibromyalgia...but my sister does. She had never had any symptoms until the birt of her last child.Not long after she really started having a lot of pain....this was 12 years ago and all the drs. she saw said there wasn't anything wrong with her....but about 5 years ago she was diagnosed with Fibro....I see everyday the pain she is in.The drs. have tried all kinds of medication and pain meds.That was one of my biggest fears when planningy surgery.The dr. told her sometimes you can have it and it doesn't"kick in" until a major injury or surgery.I just had to trust in the Lord and my drs., and face whatever happens.I do a lot of walking with my sister...that helps her more than anything.The months before my TAH I felt so bad I could hardly walk with her(we use to walk up to 2 miles a day).I wasn't able to make it but a few blocks.I am hoping now,once I recover and the weather gets better that we can start walking again. I know I haven't been much help,but I just wanted you to know I was praying for you.
Faith
  #3  
Unread 01-06-2008, 11:14 AM
Post Op & Fibromyalgia

You are NOT the only one bucko64! I'd have to go through all my posts here at hystersisters since after my surgery to remember all the details, but I definitely had "something" "kick in" since immediately after surgery, and likely it was something that was laying low for most of my life and flared up after losing most of my estrogen supplies. I think the problem first started with strange pains in my forearms right after surgery, then later my knees, my ankles, and so forth. For weeks now I've been suffering from what I think is arthritis of my thumbs! And the pain is pretty bad--plus it's very difficult to open screw-type bottles or even my toothpaste! I'm even wearing a thumb support brace on my hand until I see a rheumatologist a few months from now! (soonest appointment I could get.) This is all new to me. My maternal grandmother had rheumatoid arthritis and was crippled by it at a fairly early age (maybe after her own menopause??) and there's a genetic factor for RA so I am definitely worried, plus I'm convinced that I probably had some version of arthritis all along and it simply worsened after surgery. Although I'd had aches and pains in the past it was never like this, and if it's not one part of my body that's bothering me now it's another! I asked my gyno about it and of course he said it was unrelated--yet so many women complain about the same thing after surgery, it can't be just a coincidence! Most doctors just have blindfolds on--all they know is their own specialty and have little time or patience for anything else. I agree with you that it's all very frustrating--it seems we traded one problem for yet another doesn't it? Well, all we can do is go on from here and treat the new problem, doing the same as we did for our surgeries--get as much info as possible with which to help ourselves, use that info, and find and use all the support we can to help keep us strong throughout whatever these new problems are. Best wishes to you in your journey!
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  #4  
Unread 01-06-2008, 12:00 PM
med that help me

I too have fibro, chronic nerve pain and work overnight. not a good combination. My pain docs have me on 3600 mg neurontin a day for the nerve pain-norco for pain pain and zanaflex to help me sleep. getting enough sleep is a bid thing with fibro.The wonder drug that I just started is provigil-its coded for shift workers syndrome ,narcolepsy or sleep apnea but its also is being used in combination with other meds for fibro off label. Let me tell you its a wonder drug for me,it takes away most of the fatigue so I can do more, makes me feel human again, check it out. Good luck take care h.h
  #5  
Unread 01-06-2008, 12:37 PM
Post Op & Fibromyalgia

Bucko, you are not alone. I have fibro and have had it for years. It started after the birth of my 3rd child. I dreaded having this surgery for that very reason. I was afraid of a flare up, and sure enough that is just what I'm going through right now. So along with the pain in my tummy, breasts, and groin, I now have widespread pain throughout my whole body. I am still taking pain meds 3 times a day and ibuprofen 800s twice a day. I hope yours gets better but I just wanted to let you know that you aren't alone. I know what you are going through. Please rest as much as you can and go for gentle walks. I think those help the most.
happy hippie, I haven't heard of provigil, but I will defintely check on it. Thanks for the advice.
  #6  
Unread 01-06-2008, 01:50 PM
many thanks...

I will respond to each of you individually about your posts but I am so thankful. this is like a slow march to Fibro diagnosis. I had a chronic injury that seemed to be here and there and anything and everything hurt all the time.
I am a letter carrier in Canada so weather and extreme work conditions do not help. I need to keep excercising but not this much I don't.
I really think that taking percoset after the surgery without restraints and my body concentrating on the incision and inactivity I have an ok time. The minute I tried to include normal activity it was like a land mine.
I go to work at 5 am and come home at 2.... i stand or walk all day, so I come home bathe and sleep and then eat dinner watch tv, usually in bed and then sleep. On top of that of course swelly belly has become and a constant friend that won't subside until the weekend. I am still waiting for the "relief" I was going to get from the surgery.
I would in no way be a poster child for hyst. I hate the way I feel and wish some days I would have let myself keep hemoraging at least I knew the outcome then
Thanks for your thoughts and prayers
Donna
  #7  
Unread 01-06-2008, 04:59 PM
Post Op & Fibromyalgia

Donna,
I'm so sorry you are going through this. I've heard from others that it takes at least a year for everything (hormones, etc) to settle down and feel somewhat normal again. I know after my thyroidectomy, it was an entire year before my hormones got in sync. As for the fibro, I'm so sorry that you may have that--esp. since you live in Canada. I know, for me, the cold is almost unbearable. In fact, the other night, I slept with a fan on me and a light blanket to keep the nightsweats down to a min. and wound up with super, super pain the next day from being cold! I feel like I can't win for losing. lol. Anyway, I've had fibro almost 10 years so it's a big part of my life. I have periods of remission where I'll feel almost human and then I'll have a flare up where it will remind me just how much charge it can have over my life. I dream of a day without pain--or without having to take something for pain. Mine got really bad at the beginning of this past summer--worse than it had ever been. I had previously been able to deal with it by just taking 800 ibu. during the day, but this summer I got almost bedridden. I almost had it whipped again until this surgery. YUCK! I'm so sorry your hyst. has brought the pain to the forefront. Just make sure you get lots of rest and good sleep. I also started taking some great vitamins specifically for fibro. I KNOW they have given me more energy and have helped clear up my brain fogs as well as helped my quality of sleep. I went online to a doctor Rodger Murphee. You might look up that sight. Just google his name. He is an expert on fibro. Even my family doc has used his info. to treat his patients (my doc's wife, my cousin as well, also has CFS and fibro, so he's very sympathetic and eager to learn more.). I order the vitamins online. Just an fyi. Sorry this post is so long. Sending you lots of hugs.
  #8  
Unread 01-06-2008, 07:21 PM
Post Op & Fibromyalgia

Hmmm....I find all of this very interesting and helpful. I was diagnosed with fibro about 10 years ago after a long unidentifyable illness...after about 8 months and lots of sleep, massages, and working part-time, it went into remission. Occasionally I would notice that if I didn't get enough sleep or was working too hard, I'd get achy but for the most part I was fine.

Well this past week, I've been googling about fibro again because I've just been feeling achy all over, in my muscles, in my joints, just plain old yucky. So I've been wondering if it might be fibromyalgia again--man, I hope not--it just is not any fun at all. Most of all because it is so misunderstood--and I spend all this time in my head thinking its just me, if I just did more, ate better, whatever whatever, I'd feel better. And that just isn't the truth.

When I had it last night, I had a friend going through massage school and she needed to massage someone weekly as part of her homework--and I got to be that lucky person. She learned how to do a gentle massage particular to fibro patients and it really, really helped me a lot, a lot. In fact, I attribute those massages to my remission. Unfortunately, my friend has moved across the ocean to London....

You know, I always just amazed that when I come here I find others going through what I'm going through or posts that are put up just when I was thinking to put up that post. How does that happen?! I'm glad it does!

All I have to offer is empathy and some comradry and understanding. Fibro is no fun at all.

Hattie
  #9  
Unread 01-06-2008, 08:02 PM
Post Op & Fibromyalgia

oops, forgot to mention that I went on the vitamins BEFORE I had my surgery. I started them right before I went back to school and they helped a lot. I've recently started them again (day 3) and hope they help me as much as they did then. I'll keep you posted as time passes.

Hattie, I wish I had someone who could do a GENTLE massage. Just the thought of someone touching me right now makes me cringe. Maybe when I heal up some more. Thanks for the wishes of epathy and compassion. That's what I love about this sight. It has helped me so much! Just knowing I'm not alone gives my spirit a lift!
  #10  
Unread 01-07-2008, 08:29 AM
in good company

You know... I used to wonder why everyone loved massages.. I always came home with a migraine and in so much pain. I was wondering myself if I just wasn't asking for the right kind.
Hattie you are right. Fibro is basically your brain sending false symptoms to your body and so because you aren't actually hurting your body people dismiss the pain as real. I get tired of education others because often it feels like i am justifying my "laziness" as they would call it.
I loved this site after my hyst and before. There is no way I could have managed without it.
Thanks so much ladies
Donna
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