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Does anyone have fibromyalgia? Does anyone have fibromyalgia?

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  #11  
Unread 11-15-2011, 12:46 PM
Re: Does anyone have fibromyalgia?

First of all thanks so much I'm with ya on the back pain 24/7 and heavy continus bleedin It SUCKS!!! Tried the Depo shot and all that did was add on 40 extra pounds of weight like I needed it and that's about it!I'm still bleeding. Sorry I'm still new to all this so not 2 sure what RSD is hun? Sorry keep ur head up *Rena
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  #12  
Unread 11-15-2011, 01:07 PM
Re: Does anyone have fibromyalgia?

Rena I have two cats a dog and a hamster I love animals and they help me relax when Tiger and Whiskers (the cats) lie down and purrr at me and I stroke them I get very sleepy but my dog ( maddie ) is my baby lol she is a west highland white terrier crossed with a bichon frise and she follows me everywhere she is a white pompom..

I always say to my boyfriend that the minute my pain killers stop working for me I will try other things he says put it in choc brownies yum yum..
I have made a list of things to do before my op and things not to do afterwards... Stock up my freezer and hope the boys don't eat everything while im in hospital, clean everywhere and get up to date with all washing,drying and ironing, I have also bought puzzle books to keep me busy afterwards and reading books but think I might be sleeping alot to start with..

Have you got anything to do afterwards to keep you from getting bored ? I have to stay in hospital for a week then 8 wks recovery thats what Im not looking forward to..

Amanda xx
  #13  
Unread 11-15-2011, 01:11 PM
Re: Does anyone have fibromyalgia?

  Quote:
Originally Posted by RenaR View Post
First of all thanks so much I'm with ya on the back pain 24/7 and heavy continus bleedin It SUCKS!!! Tried the Depo shot and all that did was add on 40 extra pounds of weight like I needed it and that's about it!I'm still bleeding. Sorry I'm still new to all this so not 2 sure what RSD is hun? Sorry keep ur head up *Rena
CRPS/RSD is a malfunction of part of the nervous
system and the immune system as they
respond to tissue damage from trauma, such
as an accidental injury or medical procedure.
Even a minor injury, such as a sprain or deep
bruise, might trigger CRPS/RSD causing nerves
to misfire, sending constant pain signals to the
brain. This was brought on by a severe ankle sprain suffered in 12/09. It stinks. Anyhoo, looking foward to no more bleeding and back pain!!! Hugs.
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  #14  
Unread 11-15-2011, 01:13 PM
Re: Does anyone have fibromyalgia?

I completely understand what you mean about back pain I have a slipped disc in lower back and osteoarthritus so I am telling my consultant I need a pillow under my knees before they take me up to the recovery room otherwise when I wake up I will be screaming in pain and so stiff I wont walk for a week.. I walk with a stick normally but I also have a wheelchair for after my op think I will need it to start with...

hugs to all xxx
  #15  
Unread 11-15-2011, 01:24 PM
Re: Does anyone have fibromyalgia?

  Quote:
Originally Posted by AmandaJaynes View Post
I completely understand what you mean about back pain I have a slipped disc in lower back and osteoarthritus so I am telling my consultant I need a pillow under my knees before they take me up to the recovery room otherwise when I wake up I will be screaming in pain and so stiff I wont walk for a week.. I walk with a stick normally but I also have a wheelchair for after my op think I will need it to start with...

hugs to all xxx
I wish you all the best!! Hoping this will be a fix to my lower back pain!! My Dr. thinks it may be my enlarged uterus causing the pain, I sure hope so!!
  #16  
Unread 11-15-2011, 01:28 PM
Re: Does anyone have fibromyalgia?

I have had fibromyalgia for decades, and had my hysterectomy 5 1/2 weeks ago. Yes, it affected the recovery, but you can prepare yourself for it ahead of time, if possible.

I searched fibro on this site and found (somewhere) an excellent list that I took to my surgeon immediately before the surgery. Some of the things he does already, but he was SO cooperative, even automatically assuming I'd need more time off work and putting a later date than he normally would on my state disability forms.

At my first postop checkup (3 1/2 weeks), he said I really am healing a lot slower than normal. Looks great on the outside, but the pain levels are, as expected, higher than he would normally see at that point. He was on board with making sure I had adequate pain meds to keep on top of the pain. THIS IS KEY! I am still taking NORCO 10/325, but only a half at a time most of the time. I take it every 6 hours if possible, because by the time I know I need it, I'm in such severe pain that it's hard to get back on top of it. Proactively, if I "overdo", I take a whole one and a muscle relaxer as soon as I realize it, and it keeps my pain levels between a 2-4. Much better than the pain I'd be in without the proper meds!

PLEASE talk to your doctor about the effects that fibro will have on your surgery. Try to get him to be proactive during the surgery (being aware of how body position during surgery can let him help PREVENT some of the pain you would feel after surgery!) Explain how different pain meds affect you, and why you may need stronger and more pain meds, for a longer period of time. If he won't help, perhaps your primary care dr will work with you so you can heal properly. When your body is constantly dealing with pain issues, it has less energy to heal, and it's a vicious cycle.

I'll try to find that post I printed, and will post the link on this thread if I find it again. Best wishes for your upcoming surgery, my fellow princesses!
  #17  
Unread 11-15-2011, 01:37 PM
Re: Does anyone have fibromyalgia?

HERE IS THE ARTICLE FROM THIS SITE THAT MADE SUCH A HUGE DIFFERENCE IN MY RECOVERY WITH FIBROMYALGIA

https://www.hystersisters.com/vb2/article_100675.htm

I tried to make this post stand out so it's easier to find later. Hope it helps some of you.
  #18  
Unread 11-15-2011, 08:31 PM
Re: Does anyone have fibromyalgia?

Hi ladies, I thought I'd chime in about my experience. I have lupus and seem to hurt somewhere all the time. It's like my nerve endings are constantly firing. I wasn't having heavy bleeding with my periods but a lot of pain. My cervix was scarred shut from a LEEP procedure (I blame the scarring on the autoimmune disease) so I was taking continuous birth control to stop my periods. That stopped working and my period tried to come anyway, although it couldn't get through. Because of my cervix and pain my gyne recommended a hyster. I very very much didn't want to do it. I was scared I would be trading one pain for another. I was very concerned about the effect that a major surgery would have on my body. I discussed this with my rheumatologist and she said she had no concerns about the surgery whatsoever. I am almost 17 weeks post op and still in a great deal of pain. Working and commuting are extremely difficult. I have been lucky, my gyne wrote me a note for 8 weeks off work and gives me as much Tylenol 3 as I ask for. I don't think he buys into the autoimmune disease as much as he thinks I'm a slow healer. Please discuss your surgery with ALL your doctors and do lots of research and be prepared just in case you have a long road ahead, like I seem to. Best wishes to all you.
  #19  
Unread 11-15-2011, 09:02 PM
Re: Does anyone have fibromyalgia?

  Quote:
Originally Posted by sugarandspice View Post
Hi ladies, I thought I'd chime in about my experience. I have lupus and seem to hurt somewhere all the time. It's like my nerve endings are constantly firing. I wasn't having heavy bleeding with my periods but a lot of pain. My cervix was scarred shut from a LEEP procedure (I blame the scarring on the autoimmune disease) so I was taking continuous birth control to stop my periods. That stopped working and my period tried to come anyway, although it couldn't get through. Because of my cervix and pain my gyne recommended a hyster. I very very much didn't want to do it. I was scared I would be trading one pain for another. I was very concerned about the effect that a major surgery would have on my body. I discussed this with my rheumatologist and she said she had no concerns about the surgery whatsoever. I am almost 17 weeks post op and still in a great deal of pain. Working and commuting are extremely difficult. I have been lucky, my gyne wrote me a note for 8 weeks off work and gives me as much Tylenol 3 as I ask for. I don't think he buys into the autoimmune disease as much as he thinks I'm a slow healer. Please discuss your surgery with ALL your doctors and do lots of research and be prepared just in case you have a long road ahead, like I seem to. Best wishes to all you.
Thank you for sharing your experience with us. I am hoping you find some relief very soon. Hugs.
  #20  
Unread 11-15-2011, 11:29 PM
Re: Does anyone have fibromyalgia?

OMG, Thank you all so much for responding. I was starting to feel all alone on here. There were so many replies I dont know what to say, I will say that I was blessed by having children at a young age, my kids are 17, 15, 13 so they pretty much take care of the selves. They are great kids and understand my fibro. As well does my husband whom I adore of the last 17 years. He will take of the first week post op for sure. then we will rotate some people. I saw the page to print off and take to your doctors and already printed it off. Two copies so they can both get one. I am going to see my Rhuemetologists the weeks before. He has been a god send he seems to understand and believe the pain I am in and wants to find a way to stop it without haveing me on 10 different medicaiotns. I dont know how much gyno knows about this procedure and fibro but I plan on asking herel. This is really the first major surgery I am haveing and obviously freaking out a bit. Hate needles. ugh. My husband doesnt want me to have it. He thinks it move of elctive than necessary. Its hard for him to understand the pain and pressure and how much it affects your daily life and how if I take care of it now before it keeps growing getting out of control would be a better optionl. but he does support whatever choice I make 100% I'm worried about taking care of my dogs go figure,, lol . My two little one are older and no problem but for some reason in the spring I decidied to get a 5 week old male great dane. I KNOW. what was I thinking. He is now 8 months old and 90 pounds but just a big baby. which is the worry part, he loves to jump on me. and it shoud be snowing by then and danes cant really handle cold wearher. but we will work it out. I feel like I fave been venting a bit but must apologize if my grammar was bad or weird I double dosed the ambien so I cound get some sleep and I am barely typing at this point. So thank you ladies and keep in contact and keep replaying and hopefull i will do better getting back to some people. Love u all and gentle hugs <3
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