Recovery with CFS/Fibro/multi health problems?

[ahoy 3]

Hi, all! My name is Amy, I'm 27 & I am having my sleeve done on Wednesday here in Vienna, Austria. Lemme tell you, things here are REALLY different from the way they do it where you all live. (I'm an American expat, btw.)

Here's my question, the one that scares me... I hope you'll let me know what you think:

I have chronic fatigue syndrome/fibromyalgia. I caught some horrible virus in July 2009 & have been on a downward spiral ever since. It's only been the past couple mos when I got a diagnosis, & started finding things (prescriptions & supplements) that made me begin to feel a little like myself again.

Absolutely everyone (including me) is confident that losing a lot of weight will have a HUGE positive effect on my health. BUT, I'm still scared about the stress of the surgery itself. I'm terrified I will lose all the progress I have made; I am terrified I will end up back in the space where I was just 6 weeks ago, when I was so sick I was basically nonverbal and my daily exercise limit was used up walking from bed to the sofa, and to the bathroom occasionally.

I got to be much better while taking various supplements, but had to stop them pre-surgery. I'm able to stay on my 2 rxes (diflucan & trazodone) and d-ribose which helps my body replenish the energy in my muscles after exercise. I feel okay, but not great. My doc also put me on ramipril because we discovered my diastolic BP is very high. I have to occasionally take oral rehydration salts because my salt content drops too much & I get a host of very obv symptoms. I have low cortisol response too, and probably subclinical hypothyroid. My immune system doesn't "work right" even tho it is always "activated" (I have high inflammation markers, 'sticky' blood, etc.)

So, as I said... I'm absolutely terrified I'll get knocked back to square 1. I'm scared that I will take FOREVER to heal, that I will be unable to think straight cuz the brain fog will come back, and... list goes on. I expect to not work for 2-3 weeks, but I'm afraid it'll take months...

It's not stopping me from having the surgery, but I'd feel so much better to hear from you, if you had a similar situation.

Did YOU have the sleeve done when you had multiple debilitating health problems? Or especially CFS/FM? Do you think it aggravated them or made them worse while healing? Did you have more trouble healing / slower healing, or other side effects that I should prepare myself for?

Do you have any suggestions for me?

Thank you so much in advance!

[swizzly 901]

Hi there -- man, that sounds so awful!! I am sorry to hear you are having such health challenges. I do agree that losing weight will help, but it might get worse before it gets better.

I think you will need longer than 2-3 weeks off work. Truly. Your doctor there will understand. I have little pre-existing conditions other than HBP, but I was off for five weeks. You really need to be fully better before you go back to work IMO.

I have a friend with Fibromyalgia who had a RnY over a decade ago. She said it really helped her a lot. There's another poster here who has Fibro AND CFS, called 'ybnormal' -- she has a blog at www.skinnyrenee.com and you can also find her at www.weightlosssurgeryforum.com. She's just about to have surgery in a couple days as well.

Wish you ALL the best, Amy. Seriously, keep posting and you'll get through this just fine.

[ybnormal 21]

Heyas! Sorry, just saw this thread and yep, I'm going in on May25th. I have the same worries that you do. I'm not afraid so much of the surgery itself, but how I will feel when I wake up. Will I be in a flare? Will it last long? Will they be able to control my pain? I have severe fibro and chronic fatigue syndrome also, so I know what you mean about the worries about all the progress you've made so far (to me at least most days I don't feel like someone poured acid into my muscles) and ruining it. I have to ask myself though if this way of life is acceptable to me and it's not. Even if this surgery only helps me to crawl across the floor on the days I can barely walk, it will be worth it to me.

This is such a hard subject because there just isn't any real scientific data and you'll hear good results and bad results but to me, it's worth a chance at having even a smidge of my life back. I want "me" back because I lost me years ago and life this way just isn't worth it so to me, what do I have to lose?

Also about the blood pressure, it will go up when your body is in pain. I always had low bp all my life even when heavy until I was in horrible pain and the dr said that was the bodys normal response to pain.

Feel free to click on my info and email me any time! I'm so there for you and will support you and tell you every step of the way. My fibro and cfs is severe like yours, so I totally understand your fears.

Hope this helps!

XOXO Renee`

[cwalker 12]

Hi, all! My name is Amy, I'm 27 & I am having my sleeve done on Wednesday here in Vienna, Austria. Lemme tell you, things here are REALLY different from the way they do it where you all live. (I'm an American expat, btw.)

Here's my question, the one that scares me... I hope you'll let me know what you think:

I have chronic fatigue syndrome/fibromyalgia. I caught some horrible virus in July 2009 & have been on a downward spiral ever since. It's only been the past couple mos when I got a diagnosis, & started finding things (prescriptions & supplements) that made me begin to feel a little like myself again.

Absolutely everyone (including me) is confident that losing a lot of weight will have a HUGE positive effect on my health. BUT, I'm still scared about the stress of the surgery itself. I'm terrified I will lose all the progress I have made; I am terrified I will end up back in the space where I was just 6 weeks ago, when I was so sick I was basically nonverbal and my daily exercise limit was used up walking from bed to the sofa, and to the bathroom occasionally.

I got to be much better while taking various supplements, but had to stop them pre-surgery. I'm able to stay on my 2 rxes (diflucan & trazodone) and d-ribose which helps my body replenish the energy in my muscles after exercise. I feel okay, but not great. My doc also put me on ramipril because we discovered my diastolic BP is very high. I have to occasionally take oral rehydration salts because my salt content drops too much & I get a host of very obv symptoms. I have low cortisol response too, and probably subclinical hypothyroid. My immune system doesn't "work right" even tho it is always "activated" (I have high inflammation markers, 'sticky' blood, etc.)

So, as I said... I'm absolutely terrified I'll get knocked back to square 1. I'm scared that I will take FOREVER to heal, that I will be unable to think straight cuz the brain fog will come back, and... list goes on. I expect to not work for 2-3 weeks, but I'm afraid it'll take months...

It's not stopping me from having the surgery, but I'd feel so much better to hear from you, if you had a similar situation.

Did YOU have the sleeve done when you had multiple debilitating health problems? Or especially CFS/FM? Do you think it aggravated them or made them worse while healing? Did you have more trouble healing / slower healing, or other side effects that I should prepare myself for?

Do you have any suggestions for me?

Thank you so much in advance!

I have RA which is auto immune so I know you're scared, it was much wasier than I expected but I did prepare homemade broths before hand and made sure I was stocked full so I didnt have o go anywhere or worse do without something I needed because I didnt want to go out. I have to say it was the easiest surgery I have had and I have had 3 other abdominal surgeries. I'm a yr out now and I still have bruising which my Dr warned me I would heal slower than others. Good luck. Write down what you need to do so if you are in a fog you can read it and get back on track. Keep us posted!

[Valentina 2,642]

Hello!,

I have osteoarthritis, and fibromyaglia. Each is painful and unforgiving. That being said this past March I had a total knee replacement. Other than my knee buzzing and sending little shocks through my body long after the surgical pain went away, my recovery was no different from those people who had the same surgery on the same day. Of course I still go into my Fibro Fog from time to to time, but no more so than before.

I am going to get my sleeve on June 6th. I am planning on the recovery being "different" from others, but not more painful--just different. I expect to be "touch sensitive" more than usual and maybe my "fogs" will be more frequent until I have recovered completely.

In a way, I consider myself more prepared than most because I am used to having chronic daily pain. I have learned how to get ahead of pain and not let it get out of control. I control it.

I am looking forward to my surgery and so should you!! Keep positive thoughts, and beat down the negative ones.

Keep in touch and good luck!!

Valentina

[ahoy 3]

Thank you all so much!! Individual responses below...

[ahoy 3]

I have RA which is auto immune so I know you're scared, it was much wasier than I expected but I did prepare homemade broths before hand and made sure I was stocked full so I didnt have o go anywhere or worse do without something I needed because I didnt want to go out. I have to say it was the easiest surgery I have had and I have had 3 other abdominal surgeries. I'm a yr out now and I still have bruising which my Dr warned me I would heal slower than others. Good luck. Write down what you need to do so if you are in a fog you can read it and get back on track. Keep us posted!

cwalker, thank you so much for the tips. We're going to make some homemade broth tomorrow (2 days before surgery) and freeze it so my husband & I can relax when I come back. That's a great idea. And I'm going to write stuff down, not just for me but for my man. Another great idea.

I'm so glad to hear you're doing well. RA sucks the big one.

Did the surgery help you handle your RA?

[ahoy 3]

Valentina, that's great to hear about your knee. I imagine that buzzing got pretty irritating but that's probably better than you feared, right? It sounds better than what I would have feared!

You're right -- it's just time to try to be positive & let my body show me what it's going to do and how different it will be. I've prepared as much as possible in every other way. And you're the 2nd person to tell me that fibro might even be an advantage because we're already so used to dealing with pain. That's such a great point... and such a positive way to look at it. Finally, something good

I'll be sleeved a couple weeks before you so I'll let you know how it goes!

Thank you for the pep talk

Hello!,

I have osteoarthritis, and fibromyaglia. Each is painful and unforgiving. That being said this past March I had a total knee replacement. Other than my knee buzzing and sending little shocks through my body long after the surgical pain went away, my recovery was no different from those people who had the same surgery on the same day. Of course I still go into my Fibro Fog from time to to time, but no more so than before.

I am going to get my sleeve on June 6th. I am planning on the recovery being "different" from others, but not more painful--just different. I expect to be "touch sensitive" more than usual and maybe my "fogs" will be more frequent until I have recovered completely.

In a way, I consider myself more prepared than most because I am used to having chronic daily pain. I have learned how to get ahead of pain and not let it get out of control. I control it.

I am looking forward to my surgery and so should you!! Keep positive thoughts, and beat down the negative ones.

Keep in touch and good luck!!

Valentina

[ahoy 3]

Reneé, you hit the nail on the head. "I have to ask myself though if this way of life is acceptable to me and it's not." Yes, yes, yes that's it exactly. You're right. I think I might print that out and keep it in my pocket in case I feel like chickening out. This way of life is not acceptable to me either...

Same here for the surgery fears. I'm not worried about the surgery itself (any more - was worried for a while, after I had a crazy allergic reaction to something new, a food preservative, and 2 other things in 6 weeks, no pattern, creepy). I'll be in great hands. They know what they're doing. It's a pretty simple operation. Chances are slim that I have some undiscovered problem that will turn it into a crisis situation.

It's the aftermath of the physical & emotional stress that worries me. Yeah, like how will they deal with my pain. Or if my sinuses block up like cement (as they do under stress/pain/bp), will they have something to help my mouth not close while I sleep under pain meds. Etc. Will I be able to think afterwards? I hurt enough waking up on an expensive tempur-pedic at home... How on earth am I going to feel after sleeping in a hospital bed for 4-5 nights? What if I get all dizzy again? What if just standing and walking around the hospital tires me out so much I can't hold up my head?

But you're right. The long-term result is what counts. We're already suffering, a little more suffering that will actually produce IMPROVEMENTS... it's gotta be worth it.

6 weeks ago, when I was so sick already in the midst of a flare (good word), I would have welcomed the surgery right then. It's just now that I am feeling pretty ok that I feel like a chicken. But who the hell knows. I could wake up next week and be in a flare again for NO reason and with NO upside. At least this time the suffering will be for a purpose.

Will definitely be emailing you! Look for a priv msg. There may be no specific scientific research but at least we don't have to go thru it alone.

Heyas! Sorry, just saw this thread and yep, I'm going in on May25th. I have the same worries that you do. I'm not afraid so much of the surgery itself, but how I will feel when I wake up. Will I be in a flare? Will it last long? Will they be able to control my pain? I have severe fibro and chronic fatigue syndrome also, so I know what you mean about the worries about all the progress you've made so far (to me at least most days I don't feel like someone poured acid into my muscles) and ruining it. I have to ask myself though if this way of life is acceptable to me and it's not. Even if this surgery only helps me to crawl across the floor on the days I can barely walk, it will be worth it to me.

This is such a hard subject because there just isn't any real scientific data and you'll hear good results and bad results but to me, it's worth a chance at having even a smidge of my life back. I want "me" back because I lost me years ago and life this way just isn't worth it so to me, what do I have to lose?

Also about the blood pressure, it will go up when your body is in pain. I always had low bp all my life even when heavy until I was in horrible pain and the dr said that was the bodys normal response to pain.

Feel free to click on my info and email me any time! I'm so there for you and will support you and tell you every step of the way. My fibro and cfs is severe like yours, so I totally understand your fears.

Hope this helps!

XOXO Renee`

[ybnormal 21]

I actually blogged about this just this morning because I'm like you, really really scared of when I wake up. No one except one that's been there knows what that first slam-you-on-the-ground flare is like. I was sick. Really sick. Vomiting, diarrhea, dizzy, in horrible pain that felt like someone poured acid in my body. So many things that just didn't make sense at all! No one knew what it was and it was terrifying to think to myself, and even tell the Doctors "you fools are going to let me die and a MEDICAL EXAMINER is going to diagnose me!"

I cried so much that my kids started jokingly calling me "moaning myrtle" from harry potter. This went on for an agonizing 8 months and no one knew that I was suicidal. I'd made up my mind that if the next dr (I was sitting outside his office) didn't diagnose me, I was doing it on the way home. So yeah, I understand the emotional and physical sides of this.

At my last rheumatologist appointment she said "Renee I'm sorry, we're out of options. We've done it all and this is as good as it's going to get" and to me, it just wasn't enough. It's not acceptable to me. SO...I made up my mind that even if it only made it easier to crawl to the bathroom on the bad days, I had to try. Some have the surgery for weight loss but to me it's secondary to maybe getting a part of me back. Even if I only get down to 150, if I'm a healthy 150 I couldn't care less! Mkay this was when I was a bit braver cause I was about a month away from surgery. Now, like you, I'm a few DAYS away from surgery and I'm not feeling so brave at all! LOL Will it be better in the long run? ABSOLUTELY! Will it suck more than most sleeves? PROBABLY! It's hard to tell someone to just do it and don't look back. Fibro hit me all over. Every muscle group but especially my sides and chest. Major muscle groups feel like someone poured acid into them. It burns horribly until I'm writhing and crying and incoherent with pain and nothing touches it. My sides? UGH! Those are more of a "charlie horse" / muscle spasm type pain. What's the first instinct? To throw yourself around like someone having a seizure, anything to stop that muscle from cramping and stretch it out. Try as I might, nothing helps. Those are the muscles that will be cut through during surgery and those are my most agonizing when they spasm. It takes my breath.

Can I do this? yep. Will I do this? Yep. Because like I said before, THIS me is unacceptable and so I have to try.

XOXO Renee`

[happy1957 138]

Good morning Amy....

I am sorry that I can NOT answer your questions since I am not a sleever , yet! I'm also twice your age and have no diagnosed underlying ailments other than the fatigue and pain of carrying around 80-90 extra lbs.

I have a question for you. In your first paragraph you wrote that things are done really different in Austria.. Please elaborate. Is it the pre-requisites or the surgery itself. I'm very curious as I have found even here in the US that things are different from Dr. to Dr.

Thanks, Brenda

[ybnormal 21]

We can do this Amy!

[ahoy 3]

We can do this Amy!

Damn straight, we can!! GO US!

Your story is heartwrenching! I don't think our illnesses are even in the same category, girl! Mine is mostly fatigue with some pain. You got all the pain and then an extra helping