Surgery caused CFS exacerbation anyone???

Discussion in 'Fibromyalgia Main Forum' started by MsE, May 22, 2011.

  1. MsE

    MsE New Member

    On May 2 I had a mastectomy. That was bad enough, but now my legs are weak, all I want to do is flop on the bed or sofa and read, and I am just too darned tired to take the walks, etc., as the doc ordered. How long does a surgery caused exacerbation last? Anyone experience this? Now I'm going back to bed and will check for replies later. :) MsE
  2. MsE

    MsE New Member

    It's been three weeks, so maybe another week will do it? Sure hope so. At least the drains are out. My oldest daughter was here to help me until the 19th. However, I have a son in town who would come to help if necessary, and two grandchildren and a daughter-in-law who would do the same. No one really understands what CFS does, though, unless they've had it.

    The up's and down's are discouraging. I have a day when I feel a bit better and am able to take a short walk, for instance, and the family thinks: "Okay. Now mom is well. Hooray!" Then, if the next day I'm wiped out, they sort of wonder what kind of a "wus" Mom is. Maybe they don't really--but sometimes the things they say or the quick looks on their faces makes me think so. And maybe I'm just overly sensitive right now because I feel rotten.

    Whatever--I've decided to stop thinking about it as much as possible and just take care of myself the best I can. If my body tells me to stay down and sleep, I'll stay down and sleep, which is why I just woke from a nap and am going to lie back down and read.

    Thanks for writing!

  3. MsE

    MsE New Member

    I know you'e right. I'm just discouraged today because I am CFSing like crazy. I felt better when I first got home from surgery than I do now. I am going downhill instead of gradually getting stronger. Bummer!
  4. TigerLilea

    TigerLilea Active Member

    I'm very sorry to hear that you had to have a mastectomy, MsE. It might not be CFS that is the problem right now with your fatigue. A friend of mine who had surgery back in January had a serious problem with fatigue for six weeks after her surgery and she doesn't have CFS. Just give yourself time to rest and heal. Worrying that this could be CFS related is just adding to your stress and making things worse. You've had major surgery and you need to accept that it takes time to heal.
  5. MsE

    MsE New Member

    I've thought of that, TigerLilea, but the doctor told me and all my kids that I would be up and driving and doing whatever I needed to do in a couple of weeks. It hasn't happened that way, and it feels just like CFS when it's bad; so, I figured that it probably was. That, and the fact that I felt quite well when I got home and took a short walk with my daughter and was able to do some other things off and on for several days. Then, that was that. Now I just want to vegetate. Oh well. Maybe today has just been a bad day and tomorrow will be better. Right? Right! Thanks for posting.
  6. kat0465

    kat0465 New Member

    I had a total hysterectomy in 08 and it pretty much knocked me back down.... Way down again! I was having some pretty decent days before that.

    It took me months before the crash eased a bit :( my doc told me about 6 weeks and I would feel great.

    Your not even a month out, sometimes it even takes a few months for the anesthesia to run it's course on your body, not to mention the surgery itself.

    Take it easy, and don't push yourself, even if your feeling better. Easier said than done i know, but the crashes from pushing yourself too soon will make it that much harder.

    I feel for ya, and hope your better soon!!

    [This Message was Edited on 05/22/2011]
  7. Wolverine

    Wolverine Member

    Because CFSers generally have poor detox capabilities, surgery nearly always makes us worse, because anaesthetic is one of the most toxic substances they use in medicine. It is VERY powerful and has to be detoxed by the liver and other systems. It can take 6-12 months for the body to completely eliminate the drugs. Because they are so heavy they tax the detox system which in turn makes most aspects of CFS worse. As someone else mentioned, even normal people often get very fatigued from surgery. Combination of the anaesthetic, and the stress of whatever damage has been done to the body (Adrenals have to work hard also to keep up with that stress).

    My CFS got worse with every surgery I had back in the early stages of my illness. Multiple investigatory surgeries plus then gallbladder removal. After that was the worst for CFS worsening. I hope to never have to have a general again because it always puts me back so far. Can't say wont need to for sure, but one hopes!

    Best things to do is rest much as possible of course, and eat a really clean diet. Low fat with brown rice and heaps of vegetables and water lets the body/detox systems heal faster than a regular diet with alot of fat & protein etc. High dose vitamin C if you tolerate it helps with more rapid healing after surgery as well. People that have asked for (and somehow succeeded) IV vitamin C during and after surgery, recover so much faster than usual that drs/surgeons are extremely suprised.

  8. MsE

    MsE New Member

    Very good explanation. I had no idea it could take such a long time to get over this. I know the anesthetic did a number on me because I'm still coughing from it. Thank you.

    My diet has been more protein as the home health care nurse said that is what aided healing. I have been drinking lots of water and adding more veggies to my diet, but I also have to admit to eating some yummy "bad stuff" like ice cream the first week I was home. I was not diet wise yesterday either, and I know it was a mistake. Giving in to the "blues." I do take good vitamins, including lots of "C". Again, thanks for your letter.
  9. MsE

    MsE New Member

    Months, huh? Boy oh boy! I wish I had been warned about that. I do much better when I know what to expect. I really believed my surgeon when she said I'd be up and doing my regular stuff within two to three weeks. And, I know the anesthesia is still biting me because I have some gurgly coughing every morning and sometimes during the day. The home health care nurse could hear something, she said, when she listened with the stethoscope. That's been better the last couple of mornings, though. I need to quit complaining and just practice patience. I used to be good at it, but I actually believed the surgeon when she said I'd be back to normal within two to three weeks. She probably discounted CFS, huh? Thanks for writing, Kat.
  10. kat0465

    kat0465 New Member

    Yea, he didn't say much about the cfs ever;( he sold me on the idea that a lot of my pain was female related. And honestly, I was so scared they were eventually going to tell me I had a malignancy I finally had the surgery

    Not to mention they put mesh in me, and now it's trying to exit my body. That just amped up all the other pain.

    Did they give you one of those things to blow in to keep your lungs from getting all gunked up?? If so use it several times a day.

    I did the same thing, and it helped.yes, patience is something we have to do with our poor bodies.... It's just so hard when you have a life you so want to get back to.

    Our type A personalities pop up a lot!! Take Good care of yourself, believe me, the dishes,laundry, housecleaning will all be there.

    (( hugs))
  11. MsE

    MsE New Member

    Yup. I blow into the "Coach" several times a day. Can't get it past the 1500 mark, and that's difficult. Maybe three times and I'm winded. :) As for the housework: blah on it!!!!!
    But the sun is shining, the sky is blue, I would like to take a walk, but --but---but--- :-( ah, forget it. Maybe this afternoon. Maybe.
    Edited to add: I just drove into town to return videos. That's progress![This Message was Edited on 05/23/2011]
  12. MsE

    MsE New Member

    Thank you! I'm sorry your friend had to deal with this, too, but it helps to know that even women without CFS finding it draining. I guess I was naive to forget that CFS would make it more difficult to regain strength. Or, maybe it really isn't the CFS at all. Guess it isn't really worth thinking about. As my daughter says: "It is what it is."
  13. Godlovesyouandme

    Godlovesyouandme New Member

    I hope you are doing better and getting plenty of rest. I don't think your doctor understood your CFS or they would have known it could/would take longer to recover. As you said, your family and others can't really either. There have been times where I would tell the family how terrible I felt, then one would say, "So what's for dinner?" ... Really? There was a disconnect between what I said and what they seemed to understand. They don't ask that anymore. They know I can no longer cook, except very rarely. My CFS has gotten progressively worse over the last few decades. Most days I go from the bed to the recliner. I can hardly even focus to read anymore for more than a few hours a day at best. (I.E. when I'm not in the mental zombie zone.) I have a harder time even staying awake to watch TV. I had a 7 hour "nap" yesterday. I'm trying to recover from 3 days at MDAnderson hospital in Houston. And that was just doctor visits and an MRI. Both my husband and I are newly diagnosed with cancer. His is stage 4 metastatic prostate, mine is stage 0 breast cancer in both breasts with aggressive, pleomorphic cells, grade 2. The doctor and I agreed double mastectomy is the way to go, since they found more stuff on the MRI and otherwise I would have a life of being poked, prodded, biopsied, MRI'd, etc. to death and would probably still end up with mastectomies now or later.

    Everyone's energy level is different. Mine happens to be much worse than any other CFSers I know. So my response will likely be much worse. I got my wake up call about how the surgery will probably affect me when the plastic surgeon said that he rarely recommends against plastic surgery (ie reconstructive breast surgery), but that he would in my case. He said for me, with my history it could take me years, if ever, to recover. I am still worried about the upcoming double mastectomies, but there is little choice. After my son was born, it took me 3 years to sort of recover. After my daughter was born, I never got back on top. A year after that I had a nose surgery. It took 10 years for the pain to completely go away. It also took almost 10 years for the pain to go away from a low back injury. I'm worried and grieving over my impending surgery and further energy depletion, pain, etc. My family really doesn't get it. My Sunday school class cares but they don't get it really either.

    I'm already at minimal functionality. What will it be like after surgery? I don't know. And this is only the 2nd time I've ever chatted on a forum. Usually too tired. I guess the 7 hour nap helped, but can't always sleep that well, really never. I usually can only sleep for 5 or 6 hours, for the last 3 decades. 7 hours at one time is a very rare occurrence. Just the exhaustion from the trip allowed it, I guess. Don't know if I'll be able to even keep up with this forum.
  14. MsE

    MsE New Member

    You have my deepest sympathy. I wish I had words to ease your worry, but I don't except to say my mastectomy itself was painless. However, as with all surgeries, sometimes there is nerve damage that is irritating afterwards. I wish I had been told this so it hadn't come as such a darned surprise.

    As for families "not getting it," I have to tell you that recently most of my kids were here during a time I was down and out for the count. NOW they all get it. Every last one of my kids! That is a major relief.

    I know about those days when even reading is a joke, much less staying awake long enough to watch TV. Then, night comes, and I don't rest well at all. So, from someone who lives with CFS, I'm with you: sleep when you can!

    My best wishes for an easy surgery and effortless recovery go with this note to you. God bless! MsE
  15. MsE

    MsE New Member

    Thanks for writing. Too sick to respond much. More later., Thanks.
  16. Godlovesyouandme

    Godlovesyouandme New Member

    Thanks for your words and well wishes. I'll try to write down the line after surgery, if I can find this thread, etc. I really don't know much about forums. God bless you!
  17. jc16551

    jc16551 New Member


    Yes, surgeries and/or blunt traumas can cause relapse / overall de-stabilizing of the immune system in CFS. The prognosis is guarded.

    Dr. Dan
  18. Janalynn

    Janalynn New Member

    I know that when I had my double mastectomy they told me that the healing/recovery from the procedure was fairly short, the fatigue (for a normal person even) is what takes longer. I was told a good 6 weeks for recovery, but like I said, from the procedure itself, it was only about 2-3 weeks. I had reconstruction at the same time.

    I could barely lift my head for over 2 months, that's how exhausted I was. I don't have CFIDS, but certainly suffer from Chronic Fatigue. I was frustrated until I finally succumbed to it and realized that I just had to sleep etc. as much as my body told me I needed to.

    My Fibro has taken a nose dive as well. That may be caused by the added stress over a lot of things that are going on in my life.

    I'm very sorry to hear about everyone's struggles with this.

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