Joint Pain

J

Juniper

Guest
<P>Thanks for all your replies i sympathise with every one of you but it is nice to know i'm not alone in this. I seem to get a good day and then a really bad one as in today. I find it difficult to sleep as the pain is unrelenting and consequently as my husband pointed out today i look like somebody haspunchedme my eyes are so black. I find a hot bath helpsand i am at my CF clinic on Friday so hopefully they may have some answers. My vitamin levels have just been checked and are all fine and my bone scan a few months back showed no abnormalities. My chest has been abit more productive than usual so maybe if that gets sortedthis willtoo. </P>
<P>Anyway</P>
<P>Happy new year to you all X</P>
 
J

Juniper

Guest
<P>Thanks for all your replies i sympathise with every one of you but it is nice to know i'm not alone in this. I seem to get a good day and then a really bad one as in today. I find it difficult to sleep as the pain is unrelenting and consequently as my husband pointed out today i look like somebody haspunchedme my eyes are so black. I find a hot bath helpsand i am at my CF clinic on Friday so hopefully they may have some answers. My vitamin levels have just been checked and are all fine and my bone scan a few months back showed no abnormalities. My chest has been abit more productive than usual so maybe if that gets sortedthis willtoo. </P>
<P>Anyway</P>
<P>Happy new year to you all X</P>
 
M

Melly527

Guest
OMG, this thread could not be any closer to home for me! I too have a long story of horrible joint pain (symmetric and migrating) that has been going on non-stop for over 4 months now!!! There seems to be severe inflammation affecting every area of my body (CRP is getting increasingly higher and higher.) I've been going from specialist to specialist trying to figure out what is going on and NO ONE can give me any answers - it is BEYOND frustrating! My ANA titer was positive (nucleolar pattern), but the rest of my blood work is mostly normal, so I'm not fitting any diagnosis perfectly.
My rhuematologist looked at me with a puzzled look and said "Sometimes it's just too hard to figure out what's going on with CF patients...so let's just treat your symptoms..." I began Plaquinil and Tramadol 3 weeks ago, and I know it may take a while, but I have found absolutely no relief. He's hesitant to put me on Prednisone because he's afraid to compromise my immune system during this 'sick season.'
My symptom list is a mile long and I haven't slept in months. I feel like I'm trying to solve this puzzle on my own, so this thread has been so helpful - even if it's just to let me know that I'm not alone and not crazy <img src="i/expressions/face-icon-small-smile.gif" border="0">
May we all find relief in 2012!!


-----------------------------------
Mel 31 w/cf, married w/ a beautiful baby boy (8 months)
 
M

Melly527

Guest
OMG, this thread could not be any closer to home for me! I too have a long story of horrible joint pain (symmetric and migrating) that has been going on non-stop for over 4 months now!!! There seems to be severe inflammation affecting every area of my body (CRP is getting increasingly higher and higher.) I've been going from specialist to specialist trying to figure out what is going on and NO ONE can give me any answers - it is BEYOND frustrating! My ANA titer was positive (nucleolar pattern), but the rest of my blood work is mostly normal, so I'm not fitting any diagnosis perfectly.
My rhuematologist looked at me with a puzzled look and said "Sometimes it's just too hard to figure out what's going on with CF patients...so let's just treat your symptoms..." I began Plaquinil and Tramadol 3 weeks ago, and I know it may take a while, but I have found absolutely no relief. He's hesitant to put me on Prednisone because he's afraid to compromise my immune system during this 'sick season.'
My symptom list is a mile long and I haven't slept in months. I feel like I'm trying to solve this puzzle on my own, so this thread has been so helpful - even if it's just to let me know that I'm not alone and not crazy <img src="i/expressions/face-icon-small-smile.gif" border="0">
May we all find relief in 2012!!


-----------------------------------
Mel 31 w/cf, married w/ a beautiful baby boy (8 months)
 
I

imported_Momto2

New member
I'd get tested for gout.
I developed it very young, it went undiagnosed for years.
It is VERY painful and can hit almost any joint.
If it is gout, there are meds you can have on hand to stop an attack when it starts, so it doesnt get so bad.
I hope you figure it out, pain sucks.
 
I

imported_Momto2

New member
I'd get tested for gout.
I developed it very young, it went undiagnosed for years.
It is VERY painful and can hit almost any joint.
If it is gout, there are meds you can have on hand to stop an attack when it starts, so it doesnt get so bad.
I hope you figure it out, pain sucks.
 
J

jack

New member
So I was diagnosed with CF at 3.5 months. At age 4 I had surgery on both my knees for inflammation related issues (arthritis.) I have dealt with it since I was about 12 pretty regularly. I spent a few years on Sulindac and then more on Indomethacin. I had to stop taking indomethacin recently because it was messing up my kidney function. Since then I have had days when I could barely walk or stand. When this happens I take 1000mg Acetaminophen and 800mg of Ibuprofen every 8-10 hours. This seems to keep me moving.
One thing to realize is that barometric pressure has a huge effect on arthritis. Dropping pressure affects many people, hence they can "tell when a storm is coming." I get it both ways, I can tell when a storm is coming, but rising pressure for me is much worse (when the sun is coming.) You can see if you notice similar things. I also have prednisone for times when it is really bad, and some lortabs, but I don't recommend keeping that kind of stuff in the house too much or broadcasting you have it as it has a high street value.
Almost every CF patient I know deals a little with joint pain and it seems to get worse as we get older... you are not alone. Push for treatment! You know your body.
 
J

jack

New member
So I was diagnosed with CF at 3.5 months. At age 4 I had surgery on both my knees for inflammation related issues (arthritis.) I have dealt with it since I was about 12 pretty regularly. I spent a few years on Sulindac and then more on Indomethacin. I had to stop taking indomethacin recently because it was messing up my kidney function. Since then I have had days when I could barely walk or stand. When this happens I take 1000mg Acetaminophen and 800mg of Ibuprofen every 8-10 hours. This seems to keep me moving.
One thing to realize is that barometric pressure has a huge effect on arthritis. Dropping pressure affects many people, hence they can "tell when a storm is coming." I get it both ways, I can tell when a storm is coming, but rising pressure for me is much worse (when the sun is coming.) You can see if you notice similar things. I also have prednisone for times when it is really bad, and some lortabs, but I don't recommend keeping that kind of stuff in the house too much or broadcasting you have it as it has a high street value.
Almost every CF patient I know deals a little with joint pain and it seems to get worse as we get older... you are not alone. Push for treatment! You know your body.
 
B

bobanny

New member
I hear you! A few years ago I starting having arthritic pain that moved around to all my random joints and then camped out in my hands, feet and ankles. I started taking Usana Supplements which have significantly higher amounts of vitamins, minerals, and antioxidents than your run of the mill vitamins to fight the degenerative diseases so prevalent today. When my body is not fighting a lung infection, the supplements control my inflammation in my body better than any of the prescriptions my docs gave me earlier on when we were trying to figure out what was going on. I sometimes will wake up with slight aching but it goes away with movement.

Now, as I've had this for a few years, I have noticed my CF-related arthritis flaring up when I am fighting an infection. I up my antioxidents just to be on the safe side and deal with the pain until my lungs are improving. 3-4 years ago they diagnosed me with carpel tunnel too which is just another inflammation of the nerves in my wrists. My arms would fall asleep every night, in every position. I wear these gorgeous, fashionable wrist guards that keep them from falling asleep and I think it helps somewhat with my arthritis sometimes too.

If you want to know more about the supplements, just private message me. I wish more CFers knew about Usana. I have seen several positive changes in my day to day life because of them. Dr. don't know much about health products, and they should. Grrrr!!
 
B

bobanny

New member
I hear you! A few years ago I starting having arthritic pain that moved around to all my random joints and then camped out in my hands, feet and ankles. I started taking Usana Supplements which have significantly higher amounts of vitamins, minerals, and antioxidents than your run of the mill vitamins to fight the degenerative diseases so prevalent today. When my body is not fighting a lung infection, the supplements control my inflammation in my body better than any of the prescriptions my docs gave me earlier on when we were trying to figure out what was going on. I sometimes will wake up with slight aching but it goes away with movement.

Now, as I've had this for a few years, I have noticed my CF-related arthritis flaring up when I am fighting an infection. I up my antioxidents just to be on the safe side and deal with the pain until my lungs are improving. 3-4 years ago they diagnosed me with carpel tunnel too which is just another inflammation of the nerves in my wrists. My arms would fall asleep every night, in every position. I wear these gorgeous, fashionable wrist guards that keep them from falling asleep and I think it helps somewhat with my arthritis sometimes too.

If you want to know more about the supplements, just private message me. I wish more CFers knew about Usana. I have seen several positive changes in my day to day life because of them. Dr. don't know much about health products, and they should. Grrrr!!
 
S

sue35

New member
I also get horrible joint pain. I get pain in joints I didn't even know could hurt! Does anyone also get hive like bumps with it? I get them on my arms and legs and they are just as bad as the joint pain. So far, only prednisone is helping. I have also tried plaquneil but it didn't do anything.
 
S

sue35

New member
I also get horrible joint pain. I get pain in joints I didn't even know could hurt! Does anyone also get hive like bumps with it? I get them on my arms and legs and they are just as bad as the joint pain. So far, only prednisone is helping. I have also tried plaquneil but it didn't do anything.
 
C

cf4life

New member
First thought is gout. Have your uric acid levels checked. Did you have any changes to your diet before this happened. ie. Did you eat a lot of foods high in Purines...
 
C

cf4life

New member
First thought is gout. Have your uric acid levels checked. Did you have any changes to your diet before this happened. ie. Did you eat a lot of foods high in Purines...
 
J

Juniper

Guest
Had a really good clinic visit Friday so feel a lot more positive. I ended up going back to my GP before then cos the pain was so bad and i was so tired from not sleeping. He put me back on steroids which has helped. At clinic they said it could have flared up due an underlying infection so i'm starting a course of iv's next week. Coincidentally they are conducting a study of Arthritis and CF so are going to put me on that. The doctor is working closely with a rheumatologist and they will scan all my bones and work out the best treatment so here's hoping. I'll keep you informed.<img title="Smile" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-smile.gif" alt="Smile" border="0" />
 
J

Juniper

Guest
Had a really good clinic visit Friday so feel a lot more positive. I ended up going back to my GP before then cos the pain was so bad and i was so tired from not sleeping. He put me back on steroids which has helped. At clinic they said it could have flared up due an underlying infection so i'm starting a course of iv's next week. Coincidentally they are conducting a study of Arthritis and CF so are going to put me on that. The doctor is working closely with a rheumatologist and they will scan all my bones and work out the best treatment so here's hoping. I'll keep you informed.<img title="Smile" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-smile.gif" alt="Smile" border="0" />
 
D

DanG

New member
I had rheumatoid arthritis (polyarthrite in French, at the hospital where I was treated) from about 7-to 8-1/2 years old. It went away inexplicably after it attacked my feet, leavign me incapable of walkking and I was hospitalized for a couple of weeks where they did who knows what but were about to try gold treatments when it just vanished.
Except for a few stress-induced events from the age of 18 onwards it was gone.
Then 25 years later at the age of 33 it came back and I have been trying to get it to go away again or at least not bother me for the last 8 years.
I don't buy the notion that it's due to immune system excitement because of our chronically-infected state because when I was 7 years old I was barely infected, lung-wise, compared to now and it was worse then. That is just a bad answer given to cover up ignorance of the actual cause.

My arthritis disappears completely, and I really mean completely: there's simply no trace of it at all, except for permanent and visible joint damage, when I catch a cold or have the flu. For 2-3 days is busy elsewhere and by the time I begin feeling joint pain again I know I am getting over the infection I caught.

Danny
41, cfrd, cfra, etc.
 
D

DanG

New member
I had rheumatoid arthritis (polyarthrite in French, at the hospital where I was treated) from about 7-to 8-1/2 years old. It went away inexplicably after it attacked my feet, leavign me incapable of walkking and I was hospitalized for a couple of weeks where they did who knows what but were about to try gold treatments when it just vanished.
Except for a few stress-induced events from the age of 18 onwards it was gone.
Then 25 years later at the age of 33 it came back and I have been trying to get it to go away again or at least not bother me for the last 8 years.
I don't buy the notion that it's due to immune system excitement because of our chronically-infected state because when I was 7 years old I was barely infected, lung-wise, compared to now and it was worse then. That is just a bad answer given to cover up ignorance of the actual cause.

My arthritis disappears completely, and I really mean completely: there's simply no trace of it at all, except for permanent and visible joint damage, when I catch a cold or have the flu. For 2-3 days is busy elsewhere and by the time I begin feeling joint pain again I know I am getting over the infection I caught.

Danny
41, cfrd, cfra, etc.
 
M

Melissa75

Administrator
Danny,
My primary care dr told me about people with arthritis who've found that having bees sting them alleviates their arthritis symptoms. I guess the theory behind this is that it redirects the immune response to some place other than the joints. That would make sense with what you describe about no pain when you have a cold or the flu.
Maybe there is the difference between rheumatoid arthritis and CF-related arthritis in how the immune system is/isn't suppressed by infection and meds.
 
M

Melissa75

Administrator
Danny,
My primary care dr told me about people with arthritis who've found that having bees sting them alleviates their arthritis symptoms. I guess the theory behind this is that it redirects the immune response to some place other than the joints. That would make sense with what you describe about no pain when you have a cold or the flu.
Maybe there is the difference between rheumatoid arthritis and CF-related arthritis in how the immune system is/isn't suppressed by infection and meds.
 
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