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CF related Arthritis and/or pink spots again...
Jan 26, 2013 at 5:51 PM

I'm still having lots of issues with my joints hurting, bones hurting, and getting pink spots. I blogged about it a lot today. I have a fever, lotso f pink spots that hurt to the touch and are warm. My body hurts/ can't move very well. Usually it is just wrists, shoulders, knees, ankles, hips But today my spine hurts. Not my back muscles, just right where the spine is... It has been happeneing at least once a month, It used to happen once or twice a year, but since July 2012 it has happened at least once a month... Anyone else? Is it CF-related Arthritis? Looking for advice, thanks For the picture/ all CFRA blogs I have written go to: My Blog: www.lifeofcheriz.blogspot.com Or pasted blog below: So, I just got a treadmill (thanks to some awesome family I have) and I really, REALLY want to get started on my jogging. However, dun dun dun... Guess what is back. My CF- related Arthritis/ or whatever it is. I don't think this is CF Arthritis anymore... Dr. B
wants me to gets some tests done and see a Rheumatologist, to see if it is Arthritis related. I have no clue though. The past few days I have been sore, but yesterday, I woke up and I felt stiff and it hurt to move a lot. By the time I got off work I could barely move. I got rides to AppleBees (to turn in paperwork for my 2nd job) and by dinner time it was fading in and out how much it hurt. I hung out with some friends last night and it wasn't too bad. However, when I woke up I had the hives/spots on my legs and arms, and it hurt to move. At work, I was scheduled as a Host, but ended up serving too, because we were short staffed and got really busy. Andrea carried my big trays, but I don't think the running around helped. Now, I have more spots (on my legs/arms) and it hurts more. The weird thing is.... My back has never bothered me before, just legs and arms mostly, sometimes hips. [picture on right: some spots today after work] But today my Spine (not my whole back,
not the muscle, but exactly where my spine is) is really bothering me. My joints are a little swollen, I have lots of spots, and I have a fever... hmmmmm... I left a message for my Doctor (office is closed on weekends, so he will get it monday). I refuse to call the Dr. B (emergency number) on wknds and bother him/ take time from his family and kids, unless I know I need emergency surgery. That's always been my rule. Since this doesn't call for surgery, and since nowhere will see me til Monday anyway... I'll just chill for now. Tonight, My friend Sarah is bringing us dinner (so I don't have to cook) and we are going lounge and watch movies. Tomorrow I work lunch/host, then I can rest for a couple hours during a LOST marathon with Mom (2-6pm) and head off to play practice. Hopefully, it will disappear by Monday, because I start working both jobs then and I don't want to take off any time! Need to pay the bills :-) Also, my surgery is scheduled for around March 11th :-) I'll
keep you all updated on what this is, any CFers out there that have CF-Related Arthritis (how bad does it get for you? does your spine hurt? do you get a fever?) Thanks! I can't wait til this is figured out and I can start jogging, weight lifting, and focusing on getting healthier!


Answers

I have CFAA (Cystic Fibrosis Associated Arthritis) && it affects my joints, all of em. But the thing of it is about CFAA is it only occurs when I'm sick. Thats the main indicator you'll be looking for.
Jan 26, 2013 at 8:30 PM
have they measured your c-reactive protein? I wonder if you have some sort of inflammatory response cascading out of control? I am not sure what you mean by pink spots? The achiness I get hwen I come down with something know and I think it is because my inflammation is higher.
Jan 27, 2013 at 9:15 AM
Hi Cheriz,

I went to your blog and saw photos. That looks exactly like what I have experienced in the past with CFAA/CFRA (have seen it both ways - not sure which is correct).
My history with CFRA is long - I was dx when I was about 17 or 18. It started with just my joints, especially fingers, in college - totally interfered with my piano studies. As I got older into my 20's it progressed to many joints: knees elbows wrists ankles ... you name it. Starting in my late 20's and 30's I would occasionally get the bumps (small ones and then some monster size welts) along with the pains. The showed up on my legs and torso. But the bumps did not always correlate with the pain - I could also have the pain & no bumps. The episodes would last a few days and then disappear for a while. Into my 30's the arthritis was my Main complaint about my CF... I rarely had lung problems and did not need IV's until I was 37. So correlating episodes to lung exacerbation was not accurate for me. I had pain nearly every day of my life. It was so bad I had times that I could not lift myself from the couch or roll over to the other side while sleeping. I had trouble putting my bra on and reaching over my head to dress. Everything hurt from the balls of my feet to my neck (looking over my shoulder was a challenge). Life was miserable. At this point, the only thing that helped was prednisone. I had to do short bursts of pred at about 4mg. Basically my body was screaming with inflammation.

Let me make my next point a very strong point,because looking back I see that it is probably the main reason these episodes were happening. I was burning my candle at both ends most of my adult life. I loved college and worked hard, I loved my career and worked harder, I loved my family and tried to do it all. I rarely took time for myself, I rarely rested and gave my body time to heal.
At 39 my health started to spiral downward, I stepped back, took a deep breath, cried a lot, and retired.
6 months after I took that step I noticed my pains lessened in frequency and severity. I strongly feel that resting and taking the time to do all my treatments and eat right and do all the really time intensive care that CF requires has helped to improve my health and lessen the CFRA exacerbations. The only time I notice pains coming on now, is if I have had a particularly stressful & busy time.

Another thing that I think contributed to those pains - vitamin deficiency. How are you doing in that realm of CF? I was very vitamin deficient (all of them). But,when I started supplementing with VItamin D things seemed to improve some as well.

I know this is a lot to hear.... but when I read your blog I cant help but see myself in there. The part of me that said for years.... "I can do it all"... well I did do it all, and my body was screaming in response.
Maybe re-evaluate and scale back a bit.

Take good care of yourself Cheriz... your body deserves nothing but the best and rest. Big Hugs
Melony
Jan 27, 2013 at 1:40 PM
Hi! Ru by any chance on a new med or anything? I def always had arthritic tendencies (I had Lymes disease as a kid which caused debilitating arthritis til it was resolved but idk if that correlates in any way to my future troubles w/ it or triggered something?)
Anyway, when I was about 24 or 25 they put me on the appetite stimulant Megase which caused a mild flare up which I didn't realize was from the medicine since I only took one or two doses in a row then stopped.
A few months later I took it again & had the worst arthritis ever, but along w/ it, got the same pink spots that u describe except I think they were hives & they appeared wherever the affected joints were. I literally couldn't move & had to be carried everywhere for several days. I also had diarrhea w/ it, but u don't seem to have that symptom. This continued to happen every month along w/ my period even tho I stopped taking the Megase until it gradually dissipated. I still get random bouts of arthritis preceding exacerbations, but I believe the allergic reaction I had to Megase triggered it.
My point is, take a careful look @ any new meds or foods/herbs you've taken bc it cud be an allergic response that ur body is going thru, especially since u said ur lungs are feeling fine atm...
I hope it gets better for u!
Jan 28, 2013 at 11:32 AM
I have similar issues. I had really bad joint pain, mostly knees and ankles to start, then it started in my wrists. With that I had a fever of 99-101 every day at the same time (3-4pm). It was that pattern for 6 months or so- then those painful joints would become swollen and hot. That lasted another 6 months. So for the whole year (2011) I was seeing CF docs, rheumotology, infectious disease, etc etc.

They ruled out lyme disease, lupus, etc etc etc.

So the experiment was to try 5mg of prednisone for 3 months while getting on Plaquenil. The Plaquenil is used for Lupus. Since Feb 2012, I have had no issues with my joints. I've been working at strengthening them as well, since the year I was limited mobility made my legs really weak.

So maybe ask about trying that.
Jan 28, 2013 at 7:19 PM
When I was in high school I had the same exact thing happen to me. I would get rev bumps/lesions on my body and my joints would ache. When it started it only happened once in a blue moon. Usually when I wore my body down. Then it started happening monthly. And I realized it would correlate with my monthly periods. At this point I had seen my care physician, a dermatologist, a rheumatologist, and my Cf docs about this issue and no one knew what it was or had any good information for me. So I decided to experiment. I got on Depo-Provera because that stop my monthly menstrual cycle. Oddly enough it also stopped my bumps and the aches. I have been on it ever since. And I have never had my bumps or pain return. I get density bone scans done yearly due to the Depo but it totally worth it for me. Those pains were not fun at all. Good luck!
Jan 28, 2013 at 9:00 PM
Hi..I hope you find out what you have because I have the same symptoms and no one can figure it out!! I call them flare ups...My first was in 2001 and I still have them...It started one day I woke up and bam I was in pain..it's weird maybe one time my wrists, my elbows and my feet hurt ..joint/bone hurt.. the next time it might be my neck going up into my head , my knees and my chest bones which when I cough just kills me with pain...and red spots all over..on my legs and arms..like a bad rash raised bumps and warm and if you push on them they hurt..the flare ups only last about 3 days..and I usually start feeling run down tired whole body aches and a fever..for a few years I was getting maybe 2-3 flare ups a month ..in 2006 I was sent to an infectious disease doctor who tested me for lymes disease and said I had rocky mountain spotted fever and put me on doxycycline for 7 weeks ..I don't think I have lymes as I still have the flare ups not as often but I do..I have also been told I do not have RA..the doctors think it could be an autoimmune type of thing going on..if you find out what it is please let me know...Its nice to finally know someone who is going through the same problem... Take care and I hope you find some relief
Jan 28, 2013 at 10:02 PM
Hi Cheriz, I had similar bouts a few years ago and I think it was auto immune related. I now take fish oil and a glutathione accelerating supplement which both act to reduce the underlying inflammation, and I haven't had any swollen joint problems since.
Feb 04, 2013 at 8:46 PM
Cheriz,
I looked at your photo and couldn't believe it! I don't get them anymore but I did get lots of bumps like that when I was younger. I never connected that it was related to the joint pain. My first memory of joint pain was at 17 I had a wrist joint that would slip out of socket. My Dr. X-rayed it and asked me, any more arthritis symptoms? I thought he must be nuts. Now I'm eaten up with it. I"m treated with Plaquenil because of screwy ANA levels and lupus-like symptoms. I've had my thumb and big-toe joints replaced and the knees are just about there. Lyrica has helped the fibromyalgia pain and I sleep better. I can't take ibuprofen due to kidney issues so that doesn't leave a lot for pain relief. Ultram makes my lung secretions thicker. I agree you need to see a rheumatologist and get a baseline of X-rays on your joints. Good luck to you. It's difficult when you hurt all the time and it in energy sapping. Lots of hot baths and ice packs on the knees for me. Massage helps my back problems.
Feb 05, 2013 at 7:54 PM
I, too, take Plaquenil for autoimmune reactions like yours - it's been a life saver for me and it's very inexpensive! Not all CF doctors are familiar with it for the joint pain, etc., but there has been research about it's use with CF. Originally, a rheumatologist prescribed it for me, but now my CF team will do the refills.

I've taken it for somewhere around 7-8 years and have had only minor 1-2 day slight flare-ups during that time - no more week long rash/inability to move/entire body hurts flareups.
Feb 10, 2013 at 5:53 PM
Hi Cheriz, I haven't posted on here in years, & I know you posted this in January, but I am up late searching through CL, trying to find answers to my red spot/rash bumps. (I am currently having one of my episodes). I'll continue searching & keeping up with your blog as my spots are pretty much identical to your pics you posted. I'd post pics but don't know how on here. I have been having 'episodes' since fall of 2007 when I thought I sprained my ankle but it was the worst pain I've ever had. Looked like someone had burned me & I couldn't walk. The next month it was the other ankle, & then the month after that, both ankles. Within the last few years, I've been to several doctors & my latest Rheumatologist is wanting to call it Gout even though no crystals were found in my joints. The first Rheum I saw called it unusual Gout but, I don't think either is correct. I have had a transplant so things are a little different for me but almost 5 years ago now, went into chronic rejection so my body is all out of whack. I think it is CFRA and am going to see another doctor when I can find one familiar with CFRA (if that's possible). When I have an episode, the night before I typically get chills & have a fever & then the next day I wake up with the red welt looking spots that hurt very badly to the touch all over my lower legs (typically where it happens). Sometimes it's my elbows, sometimes other joints. They last a few days & then go away. If it's really bad, I am to take a higher dose steroid for 3 days. I had a friend recommend folic acid to me for the gout diagnosis & if I take it regularly, along with fish oil, I don't usually have an episode. I noticed I'm not the only one who forgets the Arthritis supplement or med on here. But Folic acid is also used in Arthritis so who knows what it is. If I ever figure this out, I will let everyone know. Have a notebook of what folks are using though & will ask my doc about next time I go in. Oh & I've had all the arthritis tests, lupus, etc. All are negative but part of me wonders if it's because I'm immunosuppressed & results are not showing up correctly. Hope your docs figure yours out too but wanted you to know I get those awful red spots too.
Apr 09, 2013 at 2:20 AM


Sep 15, 2013 at 8:14 PM
Hello!  I know that I am writing a few years after you have posted this question, but I too suffer from the exact same symptoms as you.  Currently from the top of my head to my feet I am swollen everywhere.  I have little knots and welts that have appeared and are so painful.  I too feel feverish and very achy all over, it hurts to turn my neck and so many other symptoms.  Usually my flare ups occur when I am starting to feel sick, which is every 2 months and the flare ups usually last about 2 weeks and then disappear for awhile.   I was for awhile told "cf related arthritis" by the doctors but the rheumotologist recently said it is more of an inflammatory arthritis.  I am currently taking nebumetone for it when it flares up, but I seem to be having more and more flare ups lately.   What are you taking to help with the swelling and does it help?  Thank you!
Apr 01, 2019 at 6:36 AM