CF arthritis

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tiregrl19

New member
Hi, I am 20 years old with CF. I have a CF induced disease called
Episodic Arthritis, the easiest way to explain it is that is
arthritis that comes only once in a while and more often when I am
sick. Sometimes it is so severe that I need help to change clothes,
put my hair up, go to the bathroom, etc. It is only cured by
Tylenol Athritis medicine and TONS of sleep. It brings with it red
splotches or hives, lots of achiness and high grade temps.
Basically the patient feels like and 80 year old in a younger body.
It comes when your immune system is down, i.e. not enough rest,
lung problems, stress of any kind, not eating correctly. In all
fairness this is sometimes worse than the CF because it will put
you in bed inactive for days. I just wanted to put this out there
for anyone who notices their child has these issues, I had it for
years before anyone could tell me what it is. It is very rare but
definatly out there. I also wonder if anyone in here knows what I
am talking about? I would really love to talk to them about it and
how they deal with it. God Bless and happy breathing
 
E

EnergyGal

New member
I have never heard of this and I am sorry that you are going through a very difficult time. I hope you get better soon.
 
A

anonymous

New member
Hi again
I just did a search and it seemed that many of the literature mentions CF. I did find one source that I found interesting.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.purerfoods.com/pf/mainsys.cfm?cDisplay=newsletteritem.cfm&NewsID=21
">http://www.purerfoods.com/pf/m...teritem.cfm&NewsID=21
</a>
This article mentions episodic arthritis. Very interesting article. Long read but worth it
 
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catboogie

New member
hey stephanie,

it sounds like those episodes are really awful. it is too bad you have to go through that. i have heard of cf-related arthritus, and i myself have had some "old lady" knee problems, but never as severe as you described. i hope that you are doing everything possible to stay healthy so you can avoid these times.

take care.

laura, 27
 
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anonymous

New member
Hi,
have you ever been tested for lyme disease? I just wonder because of the fevers and the "once in a while" thing, the symptoms seem a little bit similar.

Uli,43,Germany
 
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thelizardqueen

New member
I've never heard of that. I know everyonce and awhile when its cold or rainy out, some of my joints stiffen up. Extra strengh tylenol usually does the trick for me.
 
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lovingBenandCambree

New member
OH MY WORD!!!! Thank you Thank you! I have this and it is horrible. No one else that I have ever talked to knows what I am talking about with the red spots that I get accompanied with the severe pain that I can barely walk. My doctors just tell me that it is CF related arthritis but even those who have had that never said it was this severe. I am glad to finally have a name with it. Who diagnosed you? I would love to talk. Its just nice to finally know that someone knows what the heck I am talking about. Thanks

Emilee
 
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Faust

New member
Oregano oil took care of all my arthritis and gout problems for good. If your arthritis involves bacteria in the joins (It could, if it comes around when you are sick), and inflamation, i'd look into taking strong doses of oregano oil under the tongue. My gout was kicking my a*s, especially after a night of drinking, but now i'm fine and no more gout symptoms or CF arthritis related symptoms at all. I'm pretty amazed the stuff isn't being marketed strictly for gout/arthritis problems considering what an a*s whoopin it put on mine.
 
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anonymous

New member
Stephanie,
I am 32 yrs old with CF and have had what you are talking about since I was about 9. My docs were puzzled at the rash that I would get...and kept saying it was some kind of a rash, although I knew differently. These episodes for me now are quite frequent and have tried many different arthritis meds. I see a rheumatologist and he says he is still not quite sure what it is ...or what causes it. He believes it resembles what is called "adult stills disease". I have looked it up and all the symptoms match. The rheumatologist believes it is an inflammatory type arthritis...therefore, prednisone helps to reduce the inflammation when I get a flare up. My episodes are happening so frequently though now, that I am on prednisone on a daily basis to try to keep the flare ups from being so bad. Like you, I am immoblie when I get a flare up. My husband has to help me out of bed to go to the bathroom. I know exactly how you feel! I have never known anyone else with it either...so it is hard for docs to know about it. I'm sorry you have it too...because I dont know of anything to do for it. I know when I get a flare up, I do sit in a hot bath...as hot as you can stand it. Unfortunately, it only helps for a while. I also took celebrex for a while...I cant remember if it is one of the meds that was taken off the market. Because, it is an anti-inflammatory it worked well...for about 2 yrs for me...I guess until my body became used to it. These are just a few suggestions...for the pain. But, if the tylenol arthritis works when you get a flare up, thats great...and unfortunately, from my experience there is really nothing else so far. My rheumatologist has been giving me meds to try...so far nothing has worked. If I find one that does...I promise I will post! Good Luck to you!
Dea
32 w/CF
 
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lovingBenandCambree

New member
I too have not found anything too help the pain. My first occurance was when I was in Kindergarten. I remember crawling up the stairs because it hurt too bad to walk and my mom had to feed me. I then didn't have an episode until I was a Junior in High School. Like Dea I have seen it getting more and more frequent. It is a very strange thing. I am just glad to know that I am not the only one. The last time it happened was about 2 months ago and it was the worst ever. My husband had to roll me over in bed because I was physically unable to do it myself. The pain was unbearable. I am sorry that anyone has to go through this.

Emilee
 
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PeterC

New member
Same question to all of you with this problem!!

Do you have a sweet tooth? Do you consume many sweets? Do you consume much sugar?

The answer to this question may lead to the solution to your problem!!


Sincerely:

PeterC
 
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anonymous

New member
To answer Peter C,
No...I do not consume a large amount of sugar...I am diabetic...so I actually watch the intake. So that is NOT the problem!
Dea
32 w/CF
 
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tiregrl19

New member
So when I was first trying to figure out what my issue was I was
going from doctor to doctor. To make a long story extremely short,
I find out that I am one of two patients in the state of Iowa who
have this, like I said this is very rare. I only found out because
the rheumatologist that I went to was helping a CF patient a year
ago and contacted a doctor in New York and came to the conclusion
of Severe episodic arthritis. To look it up you find nothing and in
all of the CF books there is a very small paragraph that makes it
sound more like a nuisance than an actual issue. The doctor gave me
a prescription for Hydroxachloraquin, which is actually for those
that have rheumatoid arthritis. I have also seen that if I don't
get enough sleep, don't workout, have any lung issues, don't keep a
balanced diet or I am at all stressed, they show up. I hadn't had
one in three months but got a minor one on Monday (my middle finger
on right hand hurt and ring and middle finger or right foot hurt)
which was solved by taking a couple hours off of work and sleeping
ALL night. As a sidebar- I worried for the longest time that I
wouldn't be able to have a relationship with anyone or children
because how can I chase after a baby when I can't even get out of
bed. I really want to thank you Emilee because you have shown me
that it is worth every chance that you have taken to have a
beautiful little girl. I feel embarrassed by my episodes and I
think I have found the person that I want to get married to, how
did you get past that and all the other mess with CF with your
husband. I feel I am in a very confusing time in my life. My
boyfriend insists that he doesn't care that I have CF and that all
of it (including the episodes) is not an issue for him. I am so
afraid that when I move in with him that he will realize it is to
much and will leave. As you know there is no way you can have an
episode and live by yourself. It's just not possible. I would
really be interested in your thoughts.
 
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anonymous

New member
Stephanie,
I just wanted to let you know that I am married as well...10 yrs in May....and also have daughter that just turned 8! Wow! How time flies! There is no one else at my clinic that complains of these problems, however, my brother who is 25 w/CF also has it...although not quite as severe as mine. As far as my husband and my CF goes...it has become a part of both of us...not just me. We have been a couple for 15 yrs. My daughter is actually a big help now that she is older. She has always known about my CF and how it makes me sick. When I am not feeling well...she helps me out soooo much! I am very proud of her! Of course, she cant lift me and help me to the bathroom (at least not yet..shes getting there...LOL), but she gets things for me and helps me with household chores when I am not well.
I also tried plaquenil, but did not help me at all. My doc wants to start me on methotrexate...which is also used for rheumatoid arthritis.
One good thing....during my pregnancy and a few months after...I had no problems at all with the arthritis! My doc said it was because of all the hormones. It was great!
I agree with you on not being able to live by yourself during these episodes...it is physically not possible for me when I get a flare up. My husband is great and doesnt even think twice about it...I still feel like I am a burden. I believe all of us with CF feel that way with our spouses and families...least those who I have talked to about it feel that way. I dont think we can change that in us...we just have to believe them when they say it doesnt matter. Bye for now...
Dea
32 w/CF
 
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TemptressOfTheSea

New member
This may also be something to check out. It happened to me twice so far in my lifetime and it was horrible. I can honestly say it was the sickest I've ever felt...I couldn't move/get out of bed for days.

My general practitioner diagnosed it both times as erythema nodosum. It's weird, but it makes sense because it is common in people with recurrent infections.

Anyways, take a look

<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Erythema_nodosum">null</a>
 
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anonymous

New member
Wow Haley,
That is strange...because the red bumps or rash does sound like erythema nodosum. The only stranger thing is that it happens to me alot...not just a couple of times. It says the peak incidence though is in the 20-30 yr range and I have had it...at best memory...since age 9. I am printing that page out though...and going to show it to my rheumatologist. It was strange that it said something about a strep throat culture. I also get a sore throat when I start getting a flare up...do any of you? My symptoms usually include: sore throat, high fever, soreness,stiffness, pain, red bumps (more prominant on my legs) tightness in my chest...making it harder to breathe. The pain for me is all over...not just my legs. My whole body hurts. Anyway, thanks for the info.
Dea
32 w/CF
 
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TemptressOfTheSea

New member
Hey Dea,

I'm glad you found that info helpful. It's very interesting!! My doctor also said that it is more common in women. I don't recall getting a sore throat when this happened to me, but I had the very high fevers, soreness, stiffness, and those red bumps on my feet and lower legs. I knew it was happening before the spots appeared becasue my ankles would get sore then my knees, hips...all the way up.
 
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sportster

New member
Hi All!  I too have what you are talking about.  I am 43
years old and I have been getting what you are describing as far
back as I can remember.  When I was a kid, my Dad had to carry
me to the bathroom.  It is horrible!  When it starts, it
feels like arthritis in my fingers, wrists and ankles.  Then
the red spots show up about a day later.  I have been to
rheumatologists and they say there is no swelling in my joints.
 It seems to move around.  It will sometimes start in my
hips and shoulders and then move to my back and chest.  It
usually lasts about 3-5 days.  It is sometimes in my feet so
bad I can hardly walk.  I get high temps (about 101-103).
 I've been to a ton of doctors, and had countless tests.
 One doctor told me it was called Stills Disease.  But no
one has been able to do anything about it.  It even gets in my
chest, like in my cartilage,  and it kills to even breath.
 I had it about 15 years ago so bad that if I had to live that
way everyday I would have killed myself. (seriously)  But
it just comes and goes.  I do notice that I get it when i'm
not feeling well and drained.  Also, I get it if I'm on Cipro
and/or in the sun.  Sorry so long.  I thought I was the
only one.  Thanks
 
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