CF related arthritis

[JennifersHope]

Oddly enough, a friend of mine that I met online that goes to the same CF clinic as me called me yesterday....

We never met in person but we talk on the phone once in a while, and we try to keep up on each others health.. She really has been very helpful to me as she has already gone though a lot of the things that I am just starting to go through..

Anyway, I mentioned to her about my unexplained fevers and horrible body pain.. She started to tell me that a few ppl who go to my clinic but her especially have been dealing with the same thing. She told me our CF team even addressed it out in the conference in Denver..

Apparently they are looking into this body pain, fever type thing and thinking it is a CF related type arthritis.. My symptoms are a little different then hers, but she told me another girl at the clinic has similiar things..

RIght now I have very severe body pain, it is slightly relieved by being in the tub, but that is only temp, then it comes right back.. I get fevers in the early evening and then last till morning.. The pain is so bad I wake up crying in my sleep.

Anyway, I have a clinic appointment in the next week or two so I am going to bring it up to them... What I wanted to know is does anyone else have this pain/ fever? Has their doctor brought up CF related arthritis to them

Unfortunatley my friend said that thier isn't to much they can do for it, it doesn't have any pattern or anything and our dr gave her perocet to take on the really bad days.. Perocet for me isn't an option.. I can't take narcotics and work obviously... and also, my personal rule is, I wouldn't work within 24 hours of taking anything...

I also hate narcotics and the way they make me feel, muscle relaxers such as flexaril, put me to sleep for days... which also isn't an option..

I just read some more information about glucosamine chondrotin and though it is expensive.. I am going to try that to see if that helps.

I am seriously putting together a list of all the vitamins and supplements I am taking and the next time someone wants to buy me a gift, I am going to ask them to choose something on my list.. ALso I took out an AFLAC polciy which is $27.00 a month but in one years time, for each day I am in the hospital I will get paid 100.00 a day...

Anyway else hear of CF related arthritis?

Jennifer

 

[JennifersHope]

Oddly enough, a friend of mine that I met online that goes to the same CF clinic as me called me yesterday....

We never met in person but we talk on the phone once in a while, and we try to keep up on each others health.. She really has been very helpful to me as she has already gone though a lot of the things that I am just starting to go through..

Anyway, I mentioned to her about my unexplained fevers and horrible body pain.. She started to tell me that a few ppl who go to my clinic but her especially have been dealing with the same thing. She told me our CF team even addressed it out in the conference in Denver..

Apparently they are looking into this body pain, fever type thing and thinking it is a CF related type arthritis.. My symptoms are a little different then hers, but she told me another girl at the clinic has similiar things..

RIght now I have very severe body pain, it is slightly relieved by being in the tub, but that is only temp, then it comes right back.. I get fevers in the early evening and then last till morning.. The pain is so bad I wake up crying in my sleep.

Anyway, I have a clinic appointment in the next week or two so I am going to bring it up to them... What I wanted to know is does anyone else have this pain/ fever? Has their doctor brought up CF related arthritis to them

Unfortunatley my friend said that thier isn't to much they can do for it, it doesn't have any pattern or anything and our dr gave her perocet to take on the really bad days.. Perocet for me isn't an option.. I can't take narcotics and work obviously... and also, my personal rule is, I wouldn't work within 24 hours of taking anything...

I also hate narcotics and the way they make me feel, muscle relaxers such as flexaril, put me to sleep for days... which also isn't an option..

I just read some more information about glucosamine chondrotin and though it is expensive.. I am going to try that to see if that helps.

I am seriously putting together a list of all the vitamins and supplements I am taking and the next time someone wants to buy me a gift, I am going to ask them to choose something on my list.. ALso I took out an AFLAC polciy which is $27.00 a month but in one years time, for each day I am in the hospital I will get paid 100.00 a day...

Anyway else hear of CF related arthritis?

Jennifer

 

[JennifersHope]

Oddly enough, a friend of mine that I met online that goes to the same CF clinic as me called me yesterday....

We never met in person but we talk on the phone once in a while, and we try to keep up on each others health.. She really has been very helpful to me as she has already gone though a lot of the things that I am just starting to go through..

Anyway, I mentioned to her about my unexplained fevers and horrible body pain.. She started to tell me that a few ppl who go to my clinic but her especially have been dealing with the same thing. She told me our CF team even addressed it out in the conference in Denver..

Apparently they are looking into this body pain, fever type thing and thinking it is a CF related type arthritis.. My symptoms are a little different then hers, but she told me another girl at the clinic has similiar things..

RIght now I have very severe body pain, it is slightly relieved by being in the tub, but that is only temp, then it comes right back.. I get fevers in the early evening and then last till morning.. The pain is so bad I wake up crying in my sleep.

Anyway, I have a clinic appointment in the next week or two so I am going to bring it up to them... What I wanted to know is does anyone else have this pain/ fever? Has their doctor brought up CF related arthritis to them

Unfortunatley my friend said that thier isn't to much they can do for it, it doesn't have any pattern or anything and our dr gave her perocet to take on the really bad days.. Perocet for me isn't an option.. I can't take narcotics and work obviously... and also, my personal rule is, I wouldn't work within 24 hours of taking anything...

I also hate narcotics and the way they make me feel, muscle relaxers such as flexaril, put me to sleep for days... which also isn't an option..

I just read some more information about glucosamine chondrotin and though it is expensive.. I am going to try that to see if that helps.

I am seriously putting together a list of all the vitamins and supplements I am taking and the next time someone wants to buy me a gift, I am going to ask them to choose something on my list.. ALso I took out an AFLAC polciy which is $27.00 a month but in one years time, for each day I am in the hospital I will get paid 100.00 a day...

Anyway else hear of CF related arthritis?

Jennifer

 

[Emily65Roses]

I'm not going to be sh*t for help, but I wanted to let you know... <b>yes</b> I have heard of arthritis in conjunction with CF.

 

[Emily65Roses]

I'm not going to be sh*t for help, but I wanted to let you know... <b>yes</b> I have heard of arthritis in conjunction with CF.

 

[Emily65Roses]

I'm not going to be sh*t for help, but I wanted to let you know... <b>yes</b> I have heard of arthritis in conjunction with CF.

 

[JustDucky]

Like Emily, I won't be of much help because I don't suffer from this affliction, but yes, I have heard of people who suffer from CF related arthritis, some are quite debilitated from it, even with swollen joints. I think a few people on this site do indeed have it and can offer more help than I except for comforting words and hopes that you get relief very soon....
I didn't realize how much pain you were in...that's awful that you wake up like that! I have pain, but not CF related...I have neuro issues that cause joint pain, muscle pain...the only thing CF related is chest discomfort from coughing so hard. I do take meds, have to...I have tried everything, I finally had to turn to narcotics at my doc's request because I was no longer sleeping and in terrible pain. Fentanyl and oxycodone along with Valium for muscle spasms (so severe at times that I have required IV Valium) Ironically, I can function mentally...but if I were working, I too would be leary of taking anything, in fact, I didn't when I was nursing as well. I didn't want to alter any judgement when it came to my patients, especially working in the ICU.
Glucosamine/chondrotin is a good arthritis supplement. People who have had severe joint issues have had relief after taking that supplement for a period of time. I told my mom to take that, it is expensive but I have heard so many positive things about it. I hope it helps you.

Again Jen, you are in my thoughts...good luck with your appt. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

Like Emily, I won't be of much help because I don't suffer from this affliction, but yes, I have heard of people who suffer from CF related arthritis, some are quite debilitated from it, even with swollen joints. I think a few people on this site do indeed have it and can offer more help than I except for comforting words and hopes that you get relief very soon....
I didn't realize how much pain you were in...that's awful that you wake up like that! I have pain, but not CF related...I have neuro issues that cause joint pain, muscle pain...the only thing CF related is chest discomfort from coughing so hard. I do take meds, have to...I have tried everything, I finally had to turn to narcotics at my doc's request because I was no longer sleeping and in terrible pain. Fentanyl and oxycodone along with Valium for muscle spasms (so severe at times that I have required IV Valium) Ironically, I can function mentally...but if I were working, I too would be leary of taking anything, in fact, I didn't when I was nursing as well. I didn't want to alter any judgement when it came to my patients, especially working in the ICU.
Glucosamine/chondrotin is a good arthritis supplement. People who have had severe joint issues have had relief after taking that supplement for a period of time. I told my mom to take that, it is expensive but I have heard so many positive things about it. I hope it helps you.

Again Jen, you are in my thoughts...good luck with your appt. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

Like Emily, I won't be of much help because I don't suffer from this affliction, but yes, I have heard of people who suffer from CF related arthritis, some are quite debilitated from it, even with swollen joints. I think a few people on this site do indeed have it and can offer more help than I except for comforting words and hopes that you get relief very soon....
I didn't realize how much pain you were in...that's awful that you wake up like that! I have pain, but not CF related...I have neuro issues that cause joint pain, muscle pain...the only thing CF related is chest discomfort from coughing so hard. I do take meds, have to...I have tried everything, I finally had to turn to narcotics at my doc's request because I was no longer sleeping and in terrible pain. Fentanyl and oxycodone along with Valium for muscle spasms (so severe at times that I have required IV Valium) Ironically, I can function mentally...but if I were working, I too would be leary of taking anything, in fact, I didn't when I was nursing as well. I didn't want to alter any judgement when it came to my patients, especially working in the ICU.
Glucosamine/chondrotin is a good arthritis supplement. People who have had severe joint issues have had relief after taking that supplement for a period of time. I told my mom to take that, it is expensive but I have heard so many positive things about it. I hope it helps you.

Again Jen, you are in my thoughts...good luck with your appt. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Justsmurfin]

I have CF related arthritis.

When it flares up I just take a high dose of ibuprofen several times a day for the duration of the episode and for several days after. I have Darvocet for when its really bad but I never take it

My left hip, my right wrist and both ankles are my worst. There isn't a lot they can do for it. It doesn't present like typical arthritis in most cases...after the episode there generally isn't any signs of arthritis, all bloodwork is normal. I get a fever and rash when mine flares up.

I also find heating pad and lots of rest to be helpful

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/arthritis.htm
">http://www.cysticfibrosismedic.../CFText/arthritis.htm
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfww.org/pub/edition_2/Joint_Manifestations_of_Cystic_Fibrosis.html">http://www.cfww.org/pub/editio...f_Cystic_Fibrosis.html</a>

 

[Justsmurfin]

I have CF related arthritis.

When it flares up I just take a high dose of ibuprofen several times a day for the duration of the episode and for several days after. I have Darvocet for when its really bad but I never take it

My left hip, my right wrist and both ankles are my worst. There isn't a lot they can do for it. It doesn't present like typical arthritis in most cases...after the episode there generally isn't any signs of arthritis, all bloodwork is normal. I get a fever and rash when mine flares up.

I also find heating pad and lots of rest to be helpful

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/arthritis.htm
">http://www.cysticfibrosismedic.../CFText/arthritis.htm
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfww.org/pub/edition_2/Joint_Manifestations_of_Cystic_Fibrosis.html">http://www.cfww.org/pub/editio...f_Cystic_Fibrosis.html</a>

 

[Justsmurfin]

I have CF related arthritis.

When it flares up I just take a high dose of ibuprofen several times a day for the duration of the episode and for several days after. I have Darvocet for when its really bad but I never take it

My left hip, my right wrist and both ankles are my worst. There isn't a lot they can do for it. It doesn't present like typical arthritis in most cases...after the episode there generally isn't any signs of arthritis, all bloodwork is normal. I get a fever and rash when mine flares up.

I also find heating pad and lots of rest to be helpful

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/arthritis.htm
">http://www.cysticfibrosismedic.../CFText/arthritis.htm
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfww.org/pub/edition_2/Joint_Manifestations_of_Cystic_Fibrosis.html">http://www.cfww.org/pub/editio...f_Cystic_Fibrosis.html</a>

 

[JennifersHope]

Thank you so much for the sweet words and Rebeka thanks so much for the links... I read them and found them to be helpful.... I am going to print them and give them to my primary doctor..

I don't know if this is the cause or not.. but I really appreciate the information... I am going to specialist next week so we will see.....

Jennifer

 

[JennifersHope]

Thank you so much for the sweet words and Rebeka thanks so much for the links... I read them and found them to be helpful.... I am going to print them and give them to my primary doctor..

I don't know if this is the cause or not.. but I really appreciate the information... I am going to specialist next week so we will see.....

Jennifer

 

[JennifersHope]

Thank you so much for the sweet words and Rebeka thanks so much for the links... I read them and found them to be helpful.... I am going to print them and give them to my primary doctor..

I don't know if this is the cause or not.. but I really appreciate the information... I am going to specialist next week so we will see.....

Jennifer

 

[rotandroll]

I've had severe CF-related arthritis since I was five! When I was a little kid my knees used to swell up and still as an adult there are some days (not frequently) where I can't walk because the arthritis in my knees or feet is too swollen/flared up.

I used to take Celebrex and it helped a lot. Ibuprofin as needed helped a lot as well. Unfortunately I now have severe kidney disease and can't take either.

There seems to be some corrolation between lung infections and arthritis as well. It is believed that while an infection is being treated, antibodies (?) from the bacteria free-floats in your body and can often times deposit themselves in your joints, causing flare ups of arthritis [edit: causing inflammation in joints, not flaring withstanding arthritis]. I think that explains why sometimes arthritis can seem worst during or after antibiotic treatment.

Ask your docs if Celebrex is a good choice for you. I used to take 100mg daily, and about 10 years ago when I was very active (snowboarded three times a week in the winter) I would take 200mg on days I was planning on doing activity.

Sorry about any gramatical errors... pain meds are a bitch! Good luck with your arthritis and know you aren't alone. = )

 

[rotandroll]

I've had severe CF-related arthritis since I was five! When I was a little kid my knees used to swell up and still as an adult there are some days (not frequently) where I can't walk because the arthritis in my knees or feet is too swollen/flared up.

I used to take Celebrex and it helped a lot. Ibuprofin as needed helped a lot as well. Unfortunately I now have severe kidney disease and can't take either.

There seems to be some corrolation between lung infections and arthritis as well. It is believed that while an infection is being treated, antibodies (?) from the bacteria free-floats in your body and can often times deposit themselves in your joints, causing flare ups of arthritis [edit: causing inflammation in joints, not flaring withstanding arthritis]. I think that explains why sometimes arthritis can seem worst during or after antibiotic treatment.

Ask your docs if Celebrex is a good choice for you. I used to take 100mg daily, and about 10 years ago when I was very active (snowboarded three times a week in the winter) I would take 200mg on days I was planning on doing activity.

Sorry about any gramatical errors... pain meds are a bitch! Good luck with your arthritis and know you aren't alone. = )

 

[rotandroll]

I've had severe CF-related arthritis since I was five! When I was a little kid my knees used to swell up and still as an adult there are some days (not frequently) where I can't walk because the arthritis in my knees or feet is too swollen/flared up.

I used to take Celebrex and it helped a lot. Ibuprofin as needed helped a lot as well. Unfortunately I now have severe kidney disease and can't take either.

There seems to be some corrolation between lung infections and arthritis as well. It is believed that while an infection is being treated, antibodies (?) from the bacteria free-floats in your body and can often times deposit themselves in your joints, causing flare ups of arthritis [edit: causing inflammation in joints, not flaring withstanding arthritis]. I think that explains why sometimes arthritis can seem worst during or after antibiotic treatment.

Ask your docs if Celebrex is a good choice for you. I used to take 100mg daily, and about 10 years ago when I was very active (snowboarded three times a week in the winter) I would take 200mg on days I was planning on doing activity.

Sorry about any gramatical errors... pain meds are a bitch! Good luck with your arthritis and know you aren't alone. = )

 

[Scarlett81]

I have cf related arthritis and I also have a condition called Henoch Schonlein's disease-it is in the arthritis/immune response illness family. Some docs feel it could be somewhat related to cf, or cf symptoms. It is very rare.
Basically the skin at my joints swells up huge-my kneecaps, wrists, ankles, even thighs. It gets hot and red and then I get red spots all over-sometimes even spots that are purple like bruises and like huge lumps.....I know, this seems like alot! You'd have to see it to believe it. Do Google images to see pics of it-its awful.
But there are theories that suggest it is related to pulmonary conditions. Now that I've moved to my new cf clinic-it is under control. But for the pain-nothing works. Sorry. Nothing. Not even percocet or the heavy pain killers. Nothing ever worked. the only thing that helped was going on steroids, but I don't tolerate steroids well. I'm sure my situation is more extreme that what you are complaining of, so perhaps someone can better reccomend somethign that helped them.
Ice packs too-and avoid heat like the PLAGUE! It may feel good to take a hot bath or use a hot pack, but it is your enemy. Heat only adds to inflammation of joints. Ice it baby.

 

[Scarlett81]

I have cf related arthritis and I also have a condition called Henoch Schonlein's disease-it is in the arthritis/immune response illness family. Some docs feel it could be somewhat related to cf, or cf symptoms. It is very rare.
Basically the skin at my joints swells up huge-my kneecaps, wrists, ankles, even thighs. It gets hot and red and then I get red spots all over-sometimes even spots that are purple like bruises and like huge lumps.....I know, this seems like alot! You'd have to see it to believe it. Do Google images to see pics of it-its awful.
But there are theories that suggest it is related to pulmonary conditions. Now that I've moved to my new cf clinic-it is under control. But for the pain-nothing works. Sorry. Nothing. Not even percocet or the heavy pain killers. Nothing ever worked. the only thing that helped was going on steroids, but I don't tolerate steroids well. I'm sure my situation is more extreme that what you are complaining of, so perhaps someone can better reccomend somethign that helped them.
Ice packs too-and avoid heat like the PLAGUE! It may feel good to take a hot bath or use a hot pack, but it is your enemy. Heat only adds to inflammation of joints. Ice it baby.