Fibromyalgia and post op recovery

Just found this site!! Great resource!! Wish I'd known about it weeks ago - I'd have taken things easier post op!

At 4 weeks + 2 days post op today. Scheduled to return to my mentally stressful, 50 hour a week office job during our busiest season - and, we're moving from the 3rd to the 1st floor, and other job transitions are taking place in my absence. I'm going to ask the doc for an extra week off during my check-up next week. I can't imagine making this transition in just 2 weeks! If I go back to soon and can't fulfill my duties, I can be reprimanded. It's a tough situation. I still have unused leave.

I have fibromyalgia. Right after surgery, my Raynaud's went crazy and I spent a few days with my feet on a hot pad. I have numbness in both feet, and now (for about a week) in 2 fingers on my left hand. I'm sure age and fibromyalgia are slowing my healing process. Does anyone else have experience with this? Seems the surgery aggitated my whole system.

Still have some discharge and no sign of stitches, as expected. So difficult to know how I will feel in less than 2 weeks. Everyone at work said, "You won't regret it!!" But, I'm SCARED! Scared that I won't be able to pull off the return to work, and dealing with increased anxiety, along with exhaustion. Thanks for listening! My good thoughts to everyone!

I would definitely ask for that extra week. Maybe even 2. Explain to your doc what's going on at your job. If it's hard for you to heal in the first place, you have to be extra careful!

I have chronic myofascial pain. It has definitely been aggravated by the surgeries. I had two surgeries 6 months apart and I hemmorhaged after the second one, 12 days post op. The second surgery was on 3/2, and I haven't been the same since. Pain that was once off and on is now just "on" all the time!

Good luck, and take it easy!



Margot

I firmly believe that a hysterectomy can bring on or exacerbate fibromyalgia or other joint, muscle, tendon syndromes. What about hysterectomy causes this? I don't know. I had a botched laparoscopic supracervical hysterectomy (LSH) in October 2004. In November 2004 I began to hemorrhage from the cervical stump (both from internal cervical stump and external--top of the vagina--stump) and had to have a second emergency surgery to try to stop the bleeding. I have never been the same since the second surgery. Not just vaginal/vulva pain (I have that constantly), but now I have what would be the classic definition of fibromyalgia. Basically, I am disabled. Prior to the surgery I had the usual aches and pains of a middle age woman. I had some dizziness/vertigo, but all of that was managable. Now, I have vulva/vaginal burning at a level of intensity that make me literally weep. I now have all the fibro symptoms and have seen several gyn, pain management, rhemy docs and my increasingly frustated internist. There are no answers.

When I was in the hosptial for the third time (March 2005)because of the botched surgery, a very well know colon rectal surgeon came to meet with me with late one night (I had a partial bowel obstruction due to the LSH surgery and he thought he might have to operate). He was tired, but talkative and not as guarded as docs usually are. I had been placed in a private room because I had a strep B infection (yes, from the LSH surgery) so there was no one to overhear the conversation. The colon rectal doc said that women have no idea what they're getting into when they have a hysterctomy. He said he has operated on more cases of pelvic prolapse (rectocele, enterocele, bowel and bladder prolapse) due to hysterectomy than any other cause. He very bluntly told me that there was NO REASON for me to have had a hysterectomy (I had lage, but essentially asymptomatic fibroids). The conversation did not last very long and then he returned to his "doctor mode," but it was the first time that a doctor had confirmed what I suspected after I had the LSH. Any hysterctomy has a risk of serious complications. Women are not told about things like mini periods, pelvic prolapse, fibromyalgia and life long side effects.

I hope that you recover and can put all this behind you. Some women have no problems after the surgery. Others of us are faced with life changing after effects.
Westcoast

I've had fibro for quite a few years now and things were pretty calm except in my neck/shoulders area. I would get nerve blocks for a opcipital nerve and trigger point injections for the muscle pain. I had botched back surgeries back in the 80's that created the whole snowball effect of chronic pain and fibro from there. Only back in the 80's they didn't know what fibro was. But I passed the trigger point test. I think that's what they call it; jeez since I've had this hyster, my brains have been so scrambled. I can't remember things and can't think of common words sometimes. I don't know if it's fibro fog or hyster fog.

All I know is I hurt, my pain level ranges from a 7 to a 8 daily. I called my pain doc and he increased my methadone. I can't have any procedures done due to the blood clots that I had right after my hyster/gall bladder surgery. I'm on an anticoagulant (coumadin) and he won't touch me til I'm off the coumadin.

It sure is nice to know that I'm not suffering alone.

As always, you ladies are in my daily prayers and always will be...

westcoast: That was a very informative and disturbing post! I just printed out this whole thread and read it to my DH. I am *so* sorry about what happened to you. I'm sorry for us *all.*

My LSH was also unneccessary. I, too, had big fibroids that were asymptomatic. I'd had them for at least 9 years that I knew of. I'd been having light bleeding and moderate cramping around my cycle almost constantly for about a year and the doc said that it was probably hormonal. Boy, am I sick of hearing that (I'm 42)! He did an ultrasound just to make sure that nothing else was going on. He found a large complex cyst on my right ovary and said that I'd need an oophorectomy and shouldn't wait longer than a month. Then he scanned down to my uterus and saw all the big fibroids and said that my uterus should go too. I only consented to the hyst part of the surgery because my uterus was pushing against my back and I asked if this could be causing my chonic, increasingly severe back pain. He said it was possible.

He left the cervix--I'm actually the one who did not want it, as just the year before I'd had carcinoma in situ on it. I believe that he pushed me toward LSH ("Oh, dyplasia is easy to detect and easy to treat!") because our hospital has one of about 100 robots in the country for robotically assisted surgeries. If he'd done the LAVH, as I wanted ( I didn't want to have to worry about cervical cancer ever again !) he wouldn't be able to use the robot. As it turned out, he'd misdiagnosed the cyst, which was the real reason for the surgery to begin with. It was a simple cyst that had ruptured before surgery. Sounds strange, but in the recovery room, when he said "Good news! We didn't have to take your ovary after all" instead of feeling relieved, I was mad. I wouldn't have had the surgery in the first place!

It really was after the LSH that my pain became chronic. Then I got the 12 day mini periods and was filling up with blood internally. But, unlike westcoast, I didn't need emergency surgery. But I became increasingly uncomfortable and had my cervix removed 6 months later. (New doc!) The pain all over my body became even worse. 12 days after that I hemmorhaged and spent 7 hours in the ER. They told me they couldn't handle me there, that I'd need a transfusion and that they'd be transferring me to the OR. The IV felt like a hand cuff--I couldn't get comfortable and lay there in pain for hours. They gave me morphine because they thought I had pelvic pain--actually my back was hurting way more! Thank God, I rallied and stopped bleeding on my own. No more surgery. When they started to talk about more surgery, I finally broke down and burst into tears.

Now I hurt *all* the time. If I squat down I can't get back up because my knees are weak and painful. I wake up from pain the middle of the night. Every morning I take a vicodin--which is on my bedside table with a glass of water--and lay on my heating pad for 1/2 an hour so that I can tend to my 4 and 5 year olds when I get up.

None of this would have happened if I hadn't had the LSH. It wasn't the fibroids that were causing the cramping and bleeding. Because when they were gone, I felt exactly the same and had these long mini periods. I am *so* angry! I did have chronic pain before, but now I feel like I am disabled. And I was just getting out of 5 tough years in the mommy cave (my kids had some special needs which were finally resolving) when the hyst came up. I went to my daughter's kindergarten orientation, my son's appt with a psychologist and my pre-op all on the same day.

Thanks you sisters for listening to my rant, for giving more valuable info (which makes me feel less crazy), and for the support. I feel better now.

Let's keep in touch!



Margot

I also have fibromyalgia...since 1997. My hysterectomy has definitely caused a major flare up. I ache allover. Major brain fog. Fatigue beyond belief. Insomnia. Not to mention the slower healing...I'm 4 wks. and still kinda feel like wk. 1 most days. I did however get diagnosed this past week with anemia, uti and pelvic infection. I"m on antibiotics, iron, vitamin, naproxen, and diphenhydramine to sleep (yea right!).
Hang in there!!!!
I'm hangin' by my nails...oh wait, i chewed those off!!!!

Thank you all for your responses to my request for info on fibromyalgia (FM) and my physical response to my surgery.

(I wonder about this, too. My breasts are fibrous, I grew fibroids like a professional and I have Fibromyalgia. Could there be any LINKS here???)

I wanted to say that my doc was very supportive. I had 3 fibroids removed 5 years ago because my periods were so painful. During the past few months I had used up all my sick leave due to severe low back pain. I went in for my chick check and found that the fibroid was now tennis ball size & located on the back of my uterus & "could" be causing back pain.

The surgery went well, although I don't think I'm healing as rapidly as I would have if I were younger and if I didn't have the FM. I still have a discharge at almost 5 weeks, and a lot of "cramping", which seems odd, since the organ that always gave me cramps is GONE! I'm exhausted by the smallest efforts to maintain myself and my home. Taking a shower and getting dressed leaves me shaking.

At 3 weeks, I drove to an appt. and backed my car into a concrete post. I haven't had an accident like this in over 20 years! So, I decided to curtail my driving. I am a space cadet! My best friend wanted me to come see her in NM, but I'm afraid to go. She's unhappy, but she has no idea how I'm really feeling, and I can't explain. You gotta walk a mile....

I am not myself at all. I will see the FM doc next week to see if I have any options. And, when I see the gyn doc next week, I will ask for at least another week off.

As I said in my earlier post, my Raynauds was off the charts. It's some better now. But, I have a terrible time sleeping and never feel rested. I have chronic pain in my neck and back, knees and feet. The numbness in my feet and now my left hand continues to be a anxiety producing annoyance. AND, my lower back pain seems to be gone. Hard to tell for sure, since I'm still taking pain meds...

I don't regret the surgery. I was very surprised at what it kicked up! I'm hoping my migraines are a thing of the past!

Still mouring the loss of my parts. He took the cervix and the ovaries, too. He said, "People who make it to 50 usually make it to 90. Your ovaries will work for 2 more years and be a threat for the next 38." Seemed logical. It's not like I planned to use them! Seems strange to know that someone was "walking" around inside me, removing bits of me and tossing them in the trash. Bizarre mental picture I have, I guess.

The nurses were nice. I rec'd competent care. I went home earlier than I wanted, but I survived. Now, I think it is a matter of getting the FM to settle down, while I agonize about my job and when I'm ready to return. Living alone makes ALL decisions more difficult to reach. It is wonderful to have a group of women who have, in some way, gone through a similar experience to "talk" to.

I am very sorry to hear about the bad experiences some have had...

Dealing with some depression, too. Have been treated for years, but it's different. Always seemed like I was it's master, but now I just don't have the "fight" in me. It's all anxiety and weakness, spread over a layer of exhaustion. I was so tired of the physical (back) pain, I guess I never considered the emotional aftermath! I know I get better every day, but it is a small consolation on THIS day!

Again - thanks for listening. This is a GREAT support group!!

Princess...

This sounds terrible! I hope that at least the back pain doesn't come back. But, how would you know with all the other stuff that's going on?

I've also been in treatment for depression for years. This experience--which you describe so well--kicked it back up for me. I'm already at the maximum dose for both zoloft and wellbutrin, but it's not working as well anymore.

I hate to say it, but it doesn't seem to me like you'll be ready for work in 2 weeks. I think you should discuss this with your FM doc. S/he would be more familiar with what is happening with your healing and what to expect than your gyn, I would think. And maybe there is some treatment for your symptoms and slow healing that the FM doc might know about. I hope so.

Let us know what happens.



Margot