New to this board -- RANT --Fibro flare and difficult recovery
Hello fellow fibro sufferers. I have had a ***** of a time since my surgery. Due to previous abdominal surgeries, my open RNY took 5 hours, I was in the hospital 8 days, I've been back in the ER twice for IV fluids, had to have an dilation endoscopy to open the opening between my esophagus and stomach (may have to have this procedure another 3-4 times), still have troubles getting in all my protein and fluids, and generally feeling like crap.
As if that weren't enough, I am now officially in a fibro flare. The weather is going up, then down, then up, now its going into the low single digits with wind chills of negative numbers.
You know, I never went into WLS thinking it would 'cure' my fibro. I've had fibro over half my life, and thought I'd come to grips with the ups and downs of it. But the double whammy of a tough recovery with a fibro flare is really getting me down.
And I can't even sleep very well because of the pain.
I was on cymbalta before my surgery, but because it is a time-released med, they took me off. I guess it goes right through too quickly to do any good.
I know there really isn't much to do but wait out the flare. Thanks for letting me rant.
As if that weren't enough, I am now officially in a fibro flare. The weather is going up, then down, then up, now its going into the low single digits with wind chills of negative numbers.
You know, I never went into WLS thinking it would 'cure' my fibro. I've had fibro over half my life, and thought I'd come to grips with the ups and downs of it. But the double whammy of a tough recovery with a fibro flare is really getting me down.
And I can't even sleep very well because of the pain.
I was on cymbalta before my surgery, but because it is a time-released med, they took me off. I guess it goes right through too quickly to do any good.
I know there really isn't much to do but wait out the flare. Thanks for letting me rant.
-----------------------------------------
Our Lady of the Holy Rollers
That's not a tiara. I just bedazzle my horns.
I am so glad my husband suggested reading this board. I don't feel so alone anymore. I really need some help, the only ones who understand what we go through are the ones living with the same pain. My story is somewhat like yours, squidsmom. So I am hoping you might be able to help.
I will give a short summary of my journey. I was diagnosed with Fibro, Chronic Fatigue, RA, Depression, Hypothyroidism, high cholesterol, possibly MS and other stuff that aren't as important in 2001. Life was tough for me with the pain and the demands of my job (I was a teacher) and family. My husband is the Fire Chief of our town, so he was around much. Most things fell on me to do.
Then two years ago, I fell at work and injured my back so badly that my spine was twisted and was cutting of the spinal fluid. I had surgery and the injury was fixed. However, I now have little to no feeling in my right leg from the knee down. Three weeks afterwards I developed blood clots in all four quadrants of my lungs and was given a 50/50 chance of living. Since then I have done everything I can to get back to my interpretation of healthy.
I could not reach my goal, and my weight ballooned to 300 lbs. My doc saw how upset I was and he suggested that GBS might be my last best chance. I had my surgery on Dec. 22 - however since then I have been more miserable than before!! I have had nausea almost all the time since my surgery. I take a lot of pills in the morning, the afternoon, and the evening, so I thought it was because I had nothing solid in my stomach for so long. I have been on food since Jan. 12, but my nausea continues!! I do not know what to do. I try to get the 60 grams of protein and 48 ounces of fluids throughout the day, but the nausea gets so bad that food/drink is just a horrible thought for me. Of course, on top of all this my Fibro. is wreaking havoc. The weather messes me up every time.
I am beginning to regret having the surgery at all. This was supposed to make me feel better, not worse. I was at my doc's office the other day and told me that I am rushing myself to be healed. He said that "healthier" people take 6 to 8 weeks to feel better after the procedure, it has only been 3 weeks for me. Someone with my history will need even more time to feel better, he said. Maybe he is right. No food sounds good to me, the pills are awful to take and I am forcing myself to drink the liquids. What kind of life have I made for myself??
Are there any hints or suggestions from any of you?? I don't want to become more of a burden on my family than I am already. Between the Fibro. pain and the GBS problems I am ready to give up on ever feeling better!!
Thanks in advance!
Liz
I will give a short summary of my journey. I was diagnosed with Fibro, Chronic Fatigue, RA, Depression, Hypothyroidism, high cholesterol, possibly MS and other stuff that aren't as important in 2001. Life was tough for me with the pain and the demands of my job (I was a teacher) and family. My husband is the Fire Chief of our town, so he was around much. Most things fell on me to do.
Then two years ago, I fell at work and injured my back so badly that my spine was twisted and was cutting of the spinal fluid. I had surgery and the injury was fixed. However, I now have little to no feeling in my right leg from the knee down. Three weeks afterwards I developed blood clots in all four quadrants of my lungs and was given a 50/50 chance of living. Since then I have done everything I can to get back to my interpretation of healthy.
I could not reach my goal, and my weight ballooned to 300 lbs. My doc saw how upset I was and he suggested that GBS might be my last best chance. I had my surgery on Dec. 22 - however since then I have been more miserable than before!! I have had nausea almost all the time since my surgery. I take a lot of pills in the morning, the afternoon, and the evening, so I thought it was because I had nothing solid in my stomach for so long. I have been on food since Jan. 12, but my nausea continues!! I do not know what to do. I try to get the 60 grams of protein and 48 ounces of fluids throughout the day, but the nausea gets so bad that food/drink is just a horrible thought for me. Of course, on top of all this my Fibro. is wreaking havoc. The weather messes me up every time.
I am beginning to regret having the surgery at all. This was supposed to make me feel better, not worse. I was at my doc's office the other day and told me that I am rushing myself to be healed. He said that "healthier" people take 6 to 8 weeks to feel better after the procedure, it has only been 3 weeks for me. Someone with my history will need even more time to feel better, he said. Maybe he is right. No food sounds good to me, the pills are awful to take and I am forcing myself to drink the liquids. What kind of life have I made for myself??
Are there any hints or suggestions from any of you?? I don't want to become more of a burden on my family than I am already. Between the Fibro. pain and the GBS problems I am ready to give up on ever feeling better!!
Thanks in advance!
Liz
Hey, Liz, I'm a bit further along from my surgery, so I hope some of my tips will help.
First and foremos****er for me might as well be lead. If I drink water, or anything mixed with water, it sits like lead and causes severe discomfort and nausea. I am getting my fluids from G2 (low-cal Gatorade) and most recently, Powerade Zero. Even then, I'm only averaging 30 oz. a day.
Food has been a struggle for me as well. I can relate to the wish "if I could just find something that appeals to me". I eat 1 oz. of cheddar and its more than enough. I'm not getting near enough protein daily, and therefore am not losing the weight. But I keep trying different things. Broiled haddock last night tasted really good.
Talk with your surgeon. He/she is the one who is most likely to have the key to your nausea. Mine decided that my opening between my esophagus and stomach was too small. They did a dilation endoscopy where they use a balloon to stretch the opening a couple weeks ago. Its a tiny bit better going for me now. They may have to do the same procedure up to 4-5 times. But your surgeon is most definitely the place to start.
Unfortunately, we can't undo much of the stuff you list for health troubles, but we can manage things like HBP, cholesterol, depression, etc. Regret is a wasted emotion. You cannot undo your surgery, you can just deal as best you can with the hand dealt you. Each day I wake and say, "baby steps today". This is a journey not a race.
Hope you find something to laugh at today. Laughter is what keeps me going.
First and foremos****er for me might as well be lead. If I drink water, or anything mixed with water, it sits like lead and causes severe discomfort and nausea. I am getting my fluids from G2 (low-cal Gatorade) and most recently, Powerade Zero. Even then, I'm only averaging 30 oz. a day.
Food has been a struggle for me as well. I can relate to the wish "if I could just find something that appeals to me". I eat 1 oz. of cheddar and its more than enough. I'm not getting near enough protein daily, and therefore am not losing the weight. But I keep trying different things. Broiled haddock last night tasted really good.
Talk with your surgeon. He/she is the one who is most likely to have the key to your nausea. Mine decided that my opening between my esophagus and stomach was too small. They did a dilation endoscopy where they use a balloon to stretch the opening a couple weeks ago. Its a tiny bit better going for me now. They may have to do the same procedure up to 4-5 times. But your surgeon is most definitely the place to start.
Unfortunately, we can't undo much of the stuff you list for health troubles, but we can manage things like HBP, cholesterol, depression, etc. Regret is a wasted emotion. You cannot undo your surgery, you can just deal as best you can with the hand dealt you. Each day I wake and say, "baby steps today". This is a journey not a race.
Hope you find something to laugh at today. Laughter is what keeps me going.
-----------------------------------------
Our Lady of the Holy Rollers
That's not a tiara. I just bedazzle my horns.
Thanks so much for the info. I have been using ISOPURE from a health food store since the surgery. It has 40 gr. of protein and 20 ounces of fluid. It tastes pretty bad after awhile and it gives my whole mouth a "wearing mittens" feel. I guess I am sick of all the bad liquids I have had to take.
I did tell my surgeon about the concerns I have. He and anyone else I have talked to have said it will get better as time goes on. In the mean time, I guess I will just have to suffer. (I hate to ask this) How about your bowel movements? Mine are about 4 days apart and very liquidy. That can't be good for my body. No one seems too worried about what I am going through.
Do you use any special kind of cheddar cheese?? I am not quite sure how water affects you like it does. I have always hated drinking water. But I have never thought of water being the problem with me. That is something to consider.
Where did you have your surgery done?? Mine was at UMASS Weight Center. My surgeon's name is Dr. Czerniach. He also arranged for me to have a tubal ligation done at the same time as my GBS.
How is your Fibro. today?? Mine is screaming!!!! When I am having an unusually bad pain day I say, I hurt all over - even my hair hurts!!! Today my hair hurts! Hope you are doing better.
Thanks again! Baby Steps, right??
LIZ
I did tell my surgeon about the concerns I have. He and anyone else I have talked to have said it will get better as time goes on. In the mean time, I guess I will just have to suffer. (I hate to ask this) How about your bowel movements? Mine are about 4 days apart and very liquidy. That can't be good for my body. No one seems too worried about what I am going through.
Do you use any special kind of cheddar cheese?? I am not quite sure how water affects you like it does. I have always hated drinking water. But I have never thought of water being the problem with me. That is something to consider.
Where did you have your surgery done?? Mine was at UMASS Weight Center. My surgeon's name is Dr. Czerniach. He also arranged for me to have a tubal ligation done at the same time as my GBS.
How is your Fibro. today?? Mine is screaming!!!! When I am having an unusually bad pain day I say, I hurt all over - even my hair hurts!!! Today my hair hurts! Hope you are doing better.
Thanks again! Baby Steps, right??
LIZ
Yep. Baby steps.
I can't handle the Isopure. The taste is too strong and makes me retch. Tried to dilute it with water, but again, the water bit me in the butt on that one, too. I know what you mean about 'mitten mouth'. . . I had that reaction to broth, too. Left the mouth feeling very mealy, and hence caused me to have the heaves.
Has your doctor given you anything for the nausea? If not, ask.
Don't go by me in the #2 dept. One of the reasons I had so many complications is because I had 80% of my colon taken out 3 years ago. Now, as before surgery, my BMs are pretty liquid owing to only having 20% colon. If you are having problems with constipation, talk to your surgeon about this, too. Keep at them until they help you!
I've been quite fortunate, really. I had my surgery at Brigham & Womens. Dr. Lautz was my surgeon and when he saw me at my first post-op appt. and saw the problems I was having, he said he wanted to see me weekly for a few weeks. I even have email access to my nut. At the moment, I'm trying to bide my time until my next endoscopy the beginning of March.
I eat Cabot cheddar cheese.
I can't handle the Isopure. The taste is too strong and makes me retch. Tried to dilute it with water, but again, the water bit me in the butt on that one, too. I know what you mean about 'mitten mouth'. . . I had that reaction to broth, too. Left the mouth feeling very mealy, and hence caused me to have the heaves.
Has your doctor given you anything for the nausea? If not, ask.
Don't go by me in the #2 dept. One of the reasons I had so many complications is because I had 80% of my colon taken out 3 years ago. Now, as before surgery, my BMs are pretty liquid owing to only having 20% colon. If you are having problems with constipation, talk to your surgeon about this, too. Keep at them until they help you!
I've been quite fortunate, really. I had my surgery at Brigham & Womens. Dr. Lautz was my surgeon and when he saw me at my first post-op appt. and saw the problems I was having, he said he wanted to see me weekly for a few weeks. I even have email access to my nut. At the moment, I'm trying to bide my time until my next endoscopy the beginning of March.
I eat Cabot cheddar cheese.
-----------------------------------------
Our Lady of the Holy Rollers
That's not a tiara. I just bedazzle my horns.
Hi there,
I just wanted to check in and see how your doing? I am off the fibro board. My name is Kimberly
or AKA birdylady. My fibro is pretty bad right now but thankfully my doc stays on top of my meds. What all do you take for your fibro?
Has your eating picked back up yet? your nausea went away?? I had WLS on July 29th. I am donw 65 lbs so far things are going ok. I am in a BAD BAD flare right now though and it HURTS.
well I just wanted to check in to see how your doing?
I just wanted to check in and see how your doing? I am off the fibro board. My name is Kimberly
or AKA birdylady. My fibro is pretty bad right now but thankfully my doc stays on top of my meds. What all do you take for your fibro?
Has your eating picked back up yet? your nausea went away?? I had WLS on July 29th. I am donw 65 lbs so far things are going ok. I am in a BAD BAD flare right now though and it HURTS.
well I just wanted to check in to see how your doing?
Kimberly"be nice to me or I will sic my ninja monkeys on you"
Hi Kimberly. My fibro is a recent high, or low, however you want to look at it. Even my eyelashes hurt. I had a meltdown in the grocery today. Hubbie wanted to go with me. I make a list but he likes to go aisle by aisle and browse. I'm fried and have been "fogged in" most of the day. The cold weather is making my fibro worse and kicking my asthmatic-butt, too. And here he is asking me "what kind of ____ do you think we should get"? Knowing full well I can't eat _______. This happened multiple times, hence the fill-in the blank, and then he got snorky with me. We had a half-full cart, and I was having a really tough time even picking up my feet much less pushing the cart. And I just started to cry. All I wanted to buy, for me, was TVP and serrano chilies. They had neither. In that 1/2 full cart, I had an eight-pack of G2. I was so embarrassed.
I take no meds anymore for fibro. They took me off cymbalta after my surgery because A) the pill is huge and I could never get it down, and B) its time-released and will flush right through. I'm not really sure it was working anyway. I really just want to hide in bed, but even that hurts and wakes me up in the night from lying too long in one place.
Although eating is improving, its no where near what it should be. I'm not really losing because I'm not eating enough. Frustrating.
Congrats on the 65 lbs.! Thanks for checking on me.
I take no meds anymore for fibro. They took me off cymbalta after my surgery because A) the pill is huge and I could never get it down, and B) its time-released and will flush right through. I'm not really sure it was working anyway. I really just want to hide in bed, but even that hurts and wakes me up in the night from lying too long in one place.
Although eating is improving, its no where near what it should be. I'm not really losing because I'm not eating enough. Frustrating.
Congrats on the 65 lbs.! Thanks for checking on me.
-----------------------------------------
Our Lady of the Holy Rollers
That's not a tiara. I just bedazzle my horns.
I know how that feels, I have had many of melt downs thats for sure. I try and control them and am alot of meds to keep me stable. I am also bi-polar so that does not help. I go in spirals up and down back an forth.
I have not tried cymbalta as the studies showed to many liver problems so my doc said nope not for you (bad livers run in the family) so I am on Opana. It is extended release though and it works pretty good. I had RNY back in July. I am on extended and instant release also. I could not imagine not being treated for the fibro. I live off my pills basically. without them I wuold probably not be able to move its that bad.
well I hope you find some help and release.
take care
Kimberly
I have not tried cymbalta as the studies showed to many liver problems so my doc said nope not for you (bad livers run in the family) so I am on Opana. It is extended release though and it works pretty good. I had RNY back in July. I am on extended and instant release also. I could not imagine not being treated for the fibro. I live off my pills basically. without them I wuold probably not be able to move its that bad.
well I hope you find some help and release.
take care
Kimberly
Kimberly"be nice to me or I will sic my ninja monkeys on you"
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