CF related arthritis

[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.

 

[wuffles]

I have 'suspected' CF-related arthritis. It only affects my knees and ankles but man, it can be painful, and seems completely random. The reason I haven't been properly diagnosed is that I play volleyball, which is extremely tough on both my knees and ankles... so neither my CF doc or physiotherapists are willing to give a definite diagnosis! Anyway... I take ibuprofen (anti-inflammatory) which reduces the pain slightly but not completely. The gel form can help as well.

 

[wuffles]

I have 'suspected' CF-related arthritis. It only affects my knees and ankles but man, it can be painful, and seems completely random. The reason I haven't been properly diagnosed is that I play volleyball, which is extremely tough on both my knees and ankles... so neither my CF doc or physiotherapists are willing to give a definite diagnosis! Anyway... I take ibuprofen (anti-inflammatory) which reduces the pain slightly but not completely. The gel form can help as well.

 

[wuffles]

I have 'suspected' CF-related arthritis. It only affects my knees and ankles but man, it can be painful, and seems completely random. The reason I haven't been properly diagnosed is that I play volleyball, which is extremely tough on both my knees and ankles... so neither my CF doc or physiotherapists are willing to give a definite diagnosis! Anyway... I take ibuprofen (anti-inflammatory) which reduces the pain slightly but not completely. The gel form can help as well.

 

[Allie]

Ry had really bad CFRA. I want to say something like 10% of Cfers do. When it would flare badly, there wasn't much else he could do but live on painkillers, which sometimes wouldn't take the apin away all the way. But one thing that helped prevent it from flaring up in the first place, hippie dippy though it might sound, was to have him get a massage twice a month. The only thing that seemed to help cut down on it. *shrug* Best of luck to you.

 

[Allie]

Ry had really bad CFRA. I want to say something like 10% of Cfers do. When it would flare badly, there wasn't much else he could do but live on painkillers, which sometimes wouldn't take the apin away all the way. But one thing that helped prevent it from flaring up in the first place, hippie dippy though it might sound, was to have him get a massage twice a month. The only thing that seemed to help cut down on it. *shrug* Best of luck to you.

 

[Allie]

Ry had really bad CFRA. I want to say something like 10% of Cfers do. When it would flare badly, there wasn't much else he could do but live on painkillers, which sometimes wouldn't take the apin away all the way. But one thing that helped prevent it from flaring up in the first place, hippie dippy though it might sound, was to have him get a massage twice a month. The only thing that seemed to help cut down on it. *shrug* Best of luck to you.

 

[charlielima]

My sister has CF related arthritis in both of her hips. She is taking Celebrex and it seems to help her most of the time. It might be something to ask your doctor about. I don't have CF but I do have rheumatoid arthritis so I know how painful it can be. Aleve seems to work well for me most days, it just depends on what works for you.

 

[charlielima]

My sister has CF related arthritis in both of her hips. She is taking Celebrex and it seems to help her most of the time. It might be something to ask your doctor about. I don't have CF but I do have rheumatoid arthritis so I know how painful it can be. Aleve seems to work well for me most days, it just depends on what works for you.

 

[charlielima]

My sister has CF related arthritis in both of her hips. She is taking Celebrex and it seems to help her most of the time. It might be something to ask your doctor about. I don't have CF but I do have rheumatoid arthritis so I know how painful it can be. Aleve seems to work well for me most days, it just depends on what works for you.

 

[thefrogprincess]

I have CF related arthritis but it sounds like you are in more pain than I am. I can tell you this though, the heat is good for it so take those baths/showers. Are you on any antiinflamatories such as ibuprofen or aleve? Arthiritis is basically inflamation in your joints. In CFers its caused because our immune system is working constantly to keep bacteria in check that it gets "confused" and starts attacking the joints. That can explain the fevers as well since your immune system is all out of whack. If over the counter antiinflamatories don't cut it, there are lots of perscription arthritis meds that are non-narcodic. Also avoid the cold as much as possible. If its cold where you work try heating pads. I keep the thermacare pads at work because I'm constantly moving around and I can just stick it on and go if I start to get cold.

 

[thefrogprincess]

I have CF related arthritis but it sounds like you are in more pain than I am. I can tell you this though, the heat is good for it so take those baths/showers. Are you on any antiinflamatories such as ibuprofen or aleve? Arthiritis is basically inflamation in your joints. In CFers its caused because our immune system is working constantly to keep bacteria in check that it gets "confused" and starts attacking the joints. That can explain the fevers as well since your immune system is all out of whack. If over the counter antiinflamatories don't cut it, there are lots of perscription arthritis meds that are non-narcodic. Also avoid the cold as much as possible. If its cold where you work try heating pads. I keep the thermacare pads at work because I'm constantly moving around and I can just stick it on and go if I start to get cold.

 

[thefrogprincess]

I have CF related arthritis but it sounds like you are in more pain than I am. I can tell you this though, the heat is good for it so take those baths/showers. Are you on any antiinflamatories such as ibuprofen or aleve? Arthiritis is basically inflamation in your joints. In CFers its caused because our immune system is working constantly to keep bacteria in check that it gets "confused" and starts attacking the joints. That can explain the fevers as well since your immune system is all out of whack. If over the counter antiinflamatories don't cut it, there are lots of perscription arthritis meds that are non-narcodic. Also avoid the cold as much as possible. If its cold where you work try heating pads. I keep the thermacare pads at work because I'm constantly moving around and I can just stick it on and go if I start to get cold.

 

[lightNlife]

Doesn't sound like CFRA. It's more likely a form of serum sickness, especially if you're on a lot of meds or have recently been on antibiotics. Steroids can also cause the pain you're describing, especially the persistent body ache.

As many of us well know, each person's presentation of CF has it's own set of rules that must be learned. We all share so much in common though that it can be tempting to self-diagnose based on others experiences, but it's far better to get the expert opinion. Even as savvy as I am with my own health care and knowledge of certain medical issues, I've learned that it's best not to de-rail the course my doctor takes with me. Going to an appointment with a preconceived notion that I am exhibiting "X symptoms of Y such and such condition" rarely solves more problems than it creates.

 

[lightNlife]

Doesn't sound like CFRA. It's more likely a form of serum sickness, especially if you're on a lot of meds or have recently been on antibiotics. Steroids can also cause the pain you're describing, especially the persistent body ache.

As many of us well know, each person's presentation of CF has it's own set of rules that must be learned. We all share so much in common though that it can be tempting to self-diagnose based on others experiences, but it's far better to get the expert opinion. Even as savvy as I am with my own health care and knowledge of certain medical issues, I've learned that it's best not to de-rail the course my doctor takes with me. Going to an appointment with a preconceived notion that I am exhibiting "X symptoms of Y such and such condition" rarely solves more problems than it creates.

 

[lightNlife]

Doesn't sound like CFRA. It's more likely a form of serum sickness, especially if you're on a lot of meds or have recently been on antibiotics. Steroids can also cause the pain you're describing, especially the persistent body ache.

As many of us well know, each person's presentation of CF has it's own set of rules that must be learned. We all share so much in common though that it can be tempting to self-diagnose based on others experiences, but it's far better to get the expert opinion. Even as savvy as I am with my own health care and knowledge of certain medical issues, I've learned that it's best not to de-rail the course my doctor takes with me. Going to an appointment with a preconceived notion that I am exhibiting "X symptoms of Y such and such condition" rarely solves more problems than it creates.

 

[CaliSally]

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[CaliSally]

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[CaliSally]

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[JennifersHope]

Thanks again for all your words of wisdom.. I was wondering if any of you have gone to a Rhuematologist to help dx you, or if your CF team did??