L
LindaJ
Guest
Does anyone have chronic pain (joints etc ) and need medication to control?
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azdesertrat
New member
Yes. I've had to deal with chronic pain issues since my transplant.
As we all know, when surgery is done, lots of nerves are cut. If the wrong nerve just happens to be in the way, oops... Chronic pain may be a result.
In my case, they hit a big'un! (Or three.)
It happened again after I had a lobectomy, 4 years post-trans. That just made the problem that mush worse.
So now I deal with pain meds & adjustments to pain meds monthly.
It sucks, but that's just the reality we're faced with.
Best of luck to you, I hope someday your chronic pain issues can be fully controlled & you go back to a somewhat normal life.
As we all know, when surgery is done, lots of nerves are cut. If the wrong nerve just happens to be in the way, oops... Chronic pain may be a result.
In my case, they hit a big'un! (Or three.)
It happened again after I had a lobectomy, 4 years post-trans. That just made the problem that mush worse.
So now I deal with pain meds & adjustments to pain meds monthly.
It sucks, but that's just the reality we're faced with.
Best of luck to you, I hope someday your chronic pain issues can be fully controlled & you go back to a somewhat normal life.
K
kgfrompa
Guest
Yes and this is one of the major things I deal with I am just home from my CF appointment and they are going to send me to pain clinc They are saying I have cronic Pleurisy I have had a Lobectomy on my other lung but ever since I had pleurodesis done I have been in so much pain I can not live with out some pain medsd I tried to not take any meds for 10 days and let me say I could not walk with out holding my sides It does suck and I wish and pray I can come up with some way to get around this I am hoping the pain clinic can help sort this out but just for today it looks so bleak!I will be following this to see where others stand,I know this cronic pleurisy is a tuff one for me! I want to add my pleurodesis was done 20 years ago, I am now 57 so this might be part of my trouble!
L
LindaJ
Guest
My daughter has c.f.. Her lungs have always been healthy. She's 28 and has had several infections but can still get 100 percent lung function. Her issues are her gut. Her stomach only functions at 45 percent and her bowel motility is very slow at best. They say she probably has fibromyalgia. She just hurts all over. Her doctors are not sure what to do for her gut. Trying different meds but nothing works for long. Anyone else deal with this? My heart goes out to all of you. You have obviously dealt with more serious issues but its to the point she can't eat. She's in the hospital now on TPN til it starts moving again.
imported_MaggieB
New member
I am 39, and have had chronic CF-related arthropathy for many years. This causes incredible joint pain in every joint. When not managed, I find it crippling. However, I take Neurontin (an off label use is arthritis) and use compression gloves (http://www.amazon.com/gp/product/B000N4G8IQ/ref=oh_details_o03_s00_i00?ie=UTF8&psc=1) and socks and that helps. Also, I sometimes find swimming helps (a gentle over-all pressure). Good luck!
My daughter has begun to deal with pain as well. Her lung function is great, usually around 125% but she seems to frequently have pain around the umbilicus. Usually when I mention it to the docs they just shrug it off, but this last bought was bad. She plays competitive soccer and it got to the point where she couldn't run without pain. X rays were done and they found she was full of fecal matter. A couple rounds of pecosalycs and titrating up her peg and shes good again. I wish that I didn't have to watch her suffer through all this. As her mom I want to help her but I feel so powerless shen it comes to this crappy cf stuff.
tummy pain
My daughter has begun to deal with pain as well. Her lung function is great, usually around 125% but she seems to frequently have pain around the umbilicus. Usually when I mention it to the docs they just shrug it off, but this last bought was bad. She plays competitive soccer and it got to the point where she couldn't run without pain. X rays were done and they found she was full of fecal matter. A couple rounds of pecosalycs and titrating up her peg and shes good again. I wish that I didn't have to watch her suffer through all this. As her mom I want to help her but I feel so powerless shen it comes to this crappy cf stuff.
My daughter has begun to deal with pain as well. Her lung function is great, usually around 125% but she seems to frequently have pain around the umbilicus. Usually when I mention it to the docs they just shrug it off, but this last bought was bad. She plays competitive soccer and it got to the point where she couldn't run without pain. X rays were done and they found she was full of fecal matter. A couple rounds of pecosalycs and titrating up her peg and shes good again. I wish that I didn't have to watch her suffer through all this. As her mom I want to help her but I feel so powerless shen it comes to this crappy cf stuff.
J
Joe2007
Guest
I have joint, muscular and chest pain on a daily basis. I manage it by taking ibuprofen every 8 hours.
PACmommy,
Have her try drinking miralax once a day - not in water (they say tasteless, but I don't think they have actually tasted it), but juice, tea, or crystal light. I have had a lot of digestive problems with my CF and this seems to help keep me regular without obstructions that cause pain.
Katie
Have her try drinking miralax once a day - not in water (they say tasteless, but I don't think they have actually tasted it), but juice, tea, or crystal light. I have had a lot of digestive problems with my CF and this seems to help keep me regular without obstructions that cause pain.
Katie
Katie615 I too have been suffering from chronic pain recently and I think it has a correlation with the NTM too. My chest pain really gets to me sometimes. I cough so bad sometimes I just lay on my bed and cry. My CF doctor wont to prescribe pain meds and my primary doctor always pushes it back onto my CF doctor and says he should give you something for pain management. Tylenol and other over the counter stuff some days just doesn't cut it. Does anyone else's CF doctor give them pain meds? I know some people maybe seeking pain pills for other reasons but in other circumstances it is necessary to have something to take the edge off. What else can I try besides Tylenol and Advil????
I have chronic pain but not due to CF. I do get rib pain from coughing but with a massage and heat that goes away pretty quickly. I have a pretty high tolerance for that part of my body. I have hip dysplasia and my hips are in constant pain (ranges anywhere from a 3 to a 10 on the pain scale). That makes me more tired that my sad lungs.
My docs only have me on Advil or Aleve (which ever once works at the given moment). I am allergic to most pain meds (most meds in general) so doc are very limited to how they can treat the chronic pain. Heat (heating pads, short showers, an occasional soak in a warm tub) help short term. I walk with an assistive device on occasion to ease the constant pain just to get through the day.
Constant pain is exhausting and I am not the most pleasant person to be around. I don't leave home but once a week because it is just too exhausting (and its is the beginning of cold and flu season and I just don't need the germs).
My docs only have me on Advil or Aleve (which ever once works at the given moment). I am allergic to most pain meds (most meds in general) so doc are very limited to how they can treat the chronic pain. Heat (heating pads, short showers, an occasional soak in a warm tub) help short term. I walk with an assistive device on occasion to ease the constant pain just to get through the day.
Constant pain is exhausting and I am not the most pleasant person to be around. I don't leave home but once a week because it is just too exhausting (and its is the beginning of cold and flu season and I just don't need the germs).
Get checked for Celiacs- everyone. I know i'm like a broken record on this forum but seriously. I was in agony before my diagnosis and afterwards and going gluten free- it was just incredible. I can handle so much crap with CF but put a few bread crumbs near my dinner plate and I will freak out. I was so relieved to realize though that the pain I was in wasn't just my CF progressing naturally and that the rest of my life didnt have to be full of agony and despair. So please get checked, it made such a difference for me and I cant imagine anyone in that kind of pain if they dont have to be.
D
dschertz
Guest
Constant pain is debilitating. I have bad(horrible) knees. Was on a few narcotics, but it ravished my digestive tract which I am having quite a bit of problems with lately. The best is long acting as the short acting is harder on the system. If one is on them for awhile, don't just stop(learned the hard way). It does help. I'm not taking any anymore, just trying to deal with it. Some days are horrible. It was a personal choice for me, but may start again once everything is back in order. They do help one do normal things with nominal pain.
G
GoryLori
Guest
Count me in as a CFer with chronic pain. Mine is mostly THORACIC. Everytime I cough (which is every minute non stop) I ache and hurt.
Forget the baby stuff like Advil & Aleve for me.....I tried massage which helped, and my doc said to try every alternative treatment I could afford to do.....but it came to either having a pain pump installed in my abdomen or having pain patches applied and after a LOT of research, I went with Pain Patches.
I've been on them for 5+ years and I still have breakthrough pain around the clock, but without the pain patches, it would be so horrible that I might do terrible things to make it stop, but we won't go there.
The patches work and I am in better control.
Every rib and muscle in my chect HURTS always, but AMEN the patches dulls it so I am not crying non stop.
Gory Lori
Forget the baby stuff like Advil & Aleve for me.....I tried massage which helped, and my doc said to try every alternative treatment I could afford to do.....but it came to either having a pain pump installed in my abdomen or having pain patches applied and after a LOT of research, I went with Pain Patches.
I've been on them for 5+ years and I still have breakthrough pain around the clock, but without the pain patches, it would be so horrible that I might do terrible things to make it stop, but we won't go there.
The patches work and I am in better control.
Every rib and muscle in my chect HURTS always, but AMEN the patches dulls it so I am not crying non stop.
Gory Lori
Please Get Checked!
Please get her checked for Celiac disease. It is so frequently missed, my CF docs missed it for a year and when you said your daughter just hurts all over that is EXACTLY what I felt like. It hurt to be touched, wearing clothes hurt, my whole body was like one big ache and my joints especially throbbed. My gut wasn't functioning normally either, it varied from constipation to the opposite. CF docs frequently miss Celiacs because the vitamin deficiencies are the same and our pancreatic enzymes often help digest some of the gluten so our GI symptoms may not indicate to a doc that it is Celiacs. I know I post so much on here encouraging people to get checked for Celiac that by now I probably seem like some crazy conspiracy theorist assuming Celiacs is around every corner but in all seriousness, I really just can't imagine other people in pain like I was and the average time for a Celiac diagnosis is 11 years after people first begin experiencing symptoms. To go through pain that can vanish with a dietary change is just awful. I only suffered for 8 months before a GI, who I went to to check out some pancreatic pain I'd had found it in an endoscopy, and then two weeks after starting the GF diet, I could walk upstairs again, I could hold my infant son without wincing in pain when he wriggled. I had my life back. They say Celiac only effects 3-5% of the CF population, but that's just the stats for those diagnosed and given how infrequently docs recommend testing for it, and the fact that the genetic population it effects is Caucasians of European descent, like CF, and the fact that they have discovered a link between heavy antibiotic use and development of Celiac disease, I image the numbers are truly much higher than that. Seriously, everyone reading this suffering from joint pain, body aches, mood swings, migraines, GI symptoms not relieved by enzymes or antacids- get checked. Celiacs also causes hypothyroidism, infertility, and a number of other issues. Please everyone who can afford the test, if you are in pain- get checked. I promise I will stop harping like a nut job on here eventually....
My daughter has c.f.. Her lungs have always been healthy. She's 28 and has had several infections but can still get 100 percent lung function. Her issues are her gut. Her stomach only functions at 45 percent and her bowel motility is very slow at best. They say she probably has fibromyalgia. She just hurts all over. Her doctors are not sure what to do for her gut. Trying different meds but nothing works for long. Anyone else deal with this? My heart goes out to all of you. You have obviously dealt with more serious issues but its to the point she can't eat. She's in the hospital now on TPN til it starts moving again.
Please get her checked for Celiac disease. It is so frequently missed, my CF docs missed it for a year and when you said your daughter just hurts all over that is EXACTLY what I felt like. It hurt to be touched, wearing clothes hurt, my whole body was like one big ache and my joints especially throbbed. My gut wasn't functioning normally either, it varied from constipation to the opposite. CF docs frequently miss Celiacs because the vitamin deficiencies are the same and our pancreatic enzymes often help digest some of the gluten so our GI symptoms may not indicate to a doc that it is Celiacs. I know I post so much on here encouraging people to get checked for Celiac that by now I probably seem like some crazy conspiracy theorist assuming Celiacs is around every corner but in all seriousness, I really just can't imagine other people in pain like I was and the average time for a Celiac diagnosis is 11 years after people first begin experiencing symptoms. To go through pain that can vanish with a dietary change is just awful. I only suffered for 8 months before a GI, who I went to to check out some pancreatic pain I'd had found it in an endoscopy, and then two weeks after starting the GF diet, I could walk upstairs again, I could hold my infant son without wincing in pain when he wriggled. I had my life back. They say Celiac only effects 3-5% of the CF population, but that's just the stats for those diagnosed and given how infrequently docs recommend testing for it, and the fact that the genetic population it effects is Caucasians of European descent, like CF, and the fact that they have discovered a link between heavy antibiotic use and development of Celiac disease, I image the numbers are truly much higher than that. Seriously, everyone reading this suffering from joint pain, body aches, mood swings, migraines, GI symptoms not relieved by enzymes or antacids- get checked. Celiacs also causes hypothyroidism, infertility, and a number of other issues. Please everyone who can afford the test, if you are in pain- get checked. I promise I will stop harping like a nut job on here eventually....
Michael Allison
New member
Check your CFTR. See if it is primarily GI related. Mine is and I have a chronic pancreas. I had acute pancreatitis multiple times which caused my pancreas to become chronic. Pain is "intractable", meaning non curable. The only option is pain management or surgery to remove your pancreas.
It is really hard living with chronic pain. You are really strong surviving such condition. Most of people I know with chronic pain are taking medication like neurontin 800 mg. But I think one thing that will support the treatment is to divert your attention to some activities that you really enjoy with. Stay strong.