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Does anyone have fibromyalgia? Does anyone have fibromyalgia?

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  #21  
Unread 11-16-2011, 05:24 AM
Re: Does anyone have fibromyalgia?

Hello ArkansasAmy nice to read your story , your not alone

Like you I am going to print out the fact sheet for the doctors to read before I go in for my op its got great points that with fibro fog I might forget to ask them.
I didn't want to have this major operation but its the only way of sorting out my fibroids so Im going to have it done and hope it stops the heavy continuous bleeding and stabbing pains I have 24/7 because I think I can just about cope with my fibro and other stuff If I don't have this ontop.. It been like hell the last four months or so... I have had to explain everything to my boyfriend and thankfully he is very understanding and loving so I know he will look after me very well and not let me do anything afterwards or I'll have him to answer to lol

Sending warm hugs
Amanda xxx
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  #22  
Unread 11-20-2011, 07:03 PM
Re: Does anyone have fibromyalgia?

I also have fibromyalgia and a slow thyroid disorder awaiting a December 2011 hyster. I will share my experiences when I can. I am already in daily pain, so its the waiting game as of now. God bless!!
  #23  
Unread 11-20-2011, 08:40 PM
Re: Does anyone have fibromyalgia?

I was diagnosed a year ago with fibro. Had my TAH Surgery 9/21/11. I was in so much pain before the surgery due to the fibro, I think the stress and worry caused my pain to escalate.

After the surgery my fibro pain didn't seem to bother me to much. I think the brain works on healing our bodies from the surgery (maybe?) Now that I'm 9 weeks out and healing, my fibro pain is taking over where the hyster pain left off, same old aches and pains I had before.
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  #24  
Unread 11-21-2011, 09:05 AM
Re: Does anyone have fibromyalgia?

Hiya I was just wondering what mesdication everyone is one for there fibro and does it work well, Im taking Gabapentin there the size of horse tablets lol but they are brilliant .. Before I was first diagnoised with fibro I was in terrible pain I'd never felt anything like it before, it was burning down the centre of each leg like my bones were on fire and it was soooo bad I couldn't even walk without crying I was sent for every test, scan and xray you can think of but kept coming back showing nothing I thought I was going mad, my G.P was great she didn't stop she beleived in me and how much I was suffering so I tried lots of different tablets and it felt like nothing was going to work then I saw a fibro specialist and she said we will try you with some Gabapentin I wasn't expecting anything good but after a month I was up walking and 80% pain free which I hadn't been for years...

Slowly my body is getting use to all my medications and so my doctor is increasing the dose slowly, I use 30mg Butrans patches (there a slow release patch that releases morphine every hr for a week ) and Im on liquid morphine aswell , I take thyroid, heart and antidepressant tablets aswell ..

Im terrified about my hyster in January but I know because of my tablets ect My pain will be sort of under control.. I was told by the consultant doing my op that I need to take in my own morphine ect so I can take more if need be but still waiting for my pre-op to find out for sure what she means..

My previous operations took a while to recover from ( I didn't have a diagnoises of fibro at this point, but was still in pain suffering ) so expecting this will take longer than the 8 weeks .. Everybody keep posting with how your all doing....

Hugs xxx Amanda
  #25  
Unread 11-21-2011, 06:47 PM
Does anyone have fibromyalgia?

  Quote:
Originally Posted by AmandaJaynes View Post
Hiya I was just wondering what mesdication everyone is one for there fibro and does it work well, Im taking Gabapentin there the size of horse tablets lol but they are brilliant .. Before I was first diagnoised with fibro I was in terrible pain I'd never felt anything like it before, it was burning down the centre of each leg like my bones were on fire and it was soooo bad I couldn't even walk without crying I was sent for every test, scan and xray you can think of but kept coming back showing nothing I thought I was going mad, my G.P was great she didn't stop she beleived in me and how much I was suffering so I tried lots of different tablets and it felt like nothing was going to work then I saw a fibro specialist and she said we will try you with some Gabapentin I wasn't expecting anything good but after a month I was up walking and 80% pain free which I hadn't been for years...

Im terrified about my hyster in January but I know because of my tablets ect My pain will be sort of under control.. I was told by the consultant doing my op that I need to take in my own morphine ect so I can take more if need be but still waiting for my pre-op to find out for sure what she means..

My previous operations took a while to recover from ( I didn't have a diagnoises of fibro at this point, but was still in pain suffering ) so expecting this will take longer than the 8 weeks .. Everybody keep posting with how your all doing....

Hugs xxx Amanda
Unfortunately I had no relief from the gabupentin and have found nothing really that helps the pain. And the hyster has seriously thrown me for a loop. The pain I'm having now is truly terrible still. I thought I had pain BEFORE the surgery. I hope you all have a better experience than mine.
  #26  
Unread 11-22-2011, 06:42 AM
Re: Does anyone have fibromyalgia?

  Quote:
Originally Posted by sugarandspice View Post
Unfortunately I had no relief from the gabupentin and have found nothing really that helps the pain. And the hyster has seriously thrown me for a loop. The pain I'm having now is truly terrible still. I thought I had pain BEFORE the surgery. I hope you all have a better experience than mine.
Hello Im so sorry to hear your suffering its horrible when you get no relief I was like that for yrs untill they found something that worked for me so don't give up, have you been given morphine or Butrans patches there amazing and I think they take most of my pain away.. you start with a 5mg patch and they go up in 5's until your finally painfree.

I started with co-codamol then Tramadol, salpadol, then the patches along with the Gabapentin Im on 30mg of patches at the mo and they only go up to 35mg so little bit worried about what happens when my body gets use to them but doctor has told me there are other things I can try.

I also see a pain specialist ( waiting list was 6 months long ) but was worth the wait the nurse knows everything to know about fibro and cfs and so can give you all the choices to try for your condition. Because I had already tried alot of different tablets she said there was 2 choices for 1st choice is accupunture ( which she showed me how to do it on myself ) sadly my hands shake alot so cannot do it very much but only other option to try was go into the hospital for half the day and get put on a drip for half a day every 6 months they inject me with a numbing liquid to numb my nerves I havn't tried this yet because of my fibroid problem this other thing has been put on hold for a while til Im feeling ok....

Gentle Hugs

Amanda xx
  #27  
Unread 11-29-2011, 11:32 AM
Re: Does anyone have fibromyalgia?

Hi Sisters!

I was diagnosed with Fibro at the age of 25. I am now 29 and tomorrow will be my 3 week post-op. I think the worse part about having fibro and going through surgery for me was the time spent in the hospital bed. I thought I would for sure die from that alone. Blood pressure cuffs are painful and well we all know how often they check that. I am one of the very few that needs constant stretching and body movement to function... so not being able to for these last 3 weeks have most certainly caused flares! ((HUGS))
  #28  
Unread 11-30-2011, 12:43 AM
Re: Does anyone have fibromyalgia?

If you are taking LDN (low-dose naltrexone) for the fibro, remember that you have to stop taking it about 2 weeks prior to surgery if you want the option of opiate based pain meds. I stopped mine in June, and when my surgery was delayed until October, I decided to stay off of the LDN until AFTER surgery. I'm still taking narcotics, and with another surgery (lumpectomy) in 2 weeks, I told my primary dr that I'll probably need narcotic pain meds through the end of the year, and will have to wait 2 weeks after my last pill to start back on the LDN. She's ordered the RX for the LDN already so I can have it ready to go.

ON A SIDE NOTE: Be careful not to fall down after surgery. Somehow I managed to fall 4 times during week 7 post-op (and I WAS being careful!), and my injuries from the falls are causing me more pain than my tummy! Guess I need to roll myself in bubble wrap until I find my sense of balance again...
  #29  
Unread 11-30-2011, 11:40 AM
Re: Does anyone have fibromyalgia?

Hi everyone, I thought I would pop in and update you. I am 4.5 months post op and still have terrible pain and severe swelling in my tummy & pelvic area. Physiotherapy made it much worse, sitting for more than 1/2 an hour is a nightmare. I've had another round of ultrasounds and spoke with my gyne yesterday. He said gynecologically there is nothing wrong and that my post op problems are related to my autoimmune disease. I will have to wait for a new rheumatologist since the one I have just shrugs her shoulders at me... I was hoping this surgery I didn't want would be the end to my pain, not the beginning of worse pain. I am currently taking anti-inflammatories and getting a little relief. Sigh.
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