joint pain?

[monds1234]

i was wondering if anyone had any problem with joint pain with cf.to start i have been off work for over a year my lung are around 25-30%(not sure if this matter or not but).Anyway i caught sick back in may twice actually lasted about three to four weeks each time and on the second time around i was on the same antibiotics as the first time.i started getting swollen joints(knees ankles wrist elbows)i thought it might be side effect of the antibiotics even tho i had just taken them not long prior.so near the end when i finished them started feeling better it got back to normal but my knees never quite did and they still hurt now even worst when im tired and have been feeling good now for a few months.its mostly when i bend my knees (sitting down or what ever). i also go for walks twice a day so. im curious if anyone has run into this problem before(also im 23 years old).
ps: im going to see my doctor monday just curious if its just me or it might somehow be cf related. thanks

 

[kmhbeauty]

It is for sure CF related. Does have to do anything with antibiotics or low lung function. I never take antibiotics and I have good lung function, but I get the joint pain all the time. I mostly get it when I start getting run down. If I don't get good sleep for a couple nights in a row, I will get it. After I have my nasal polyp surgery, I will get it also. What helps me is eating foods high in vitamin C. I also will take a vit C supplement from the health food store. Airbourn, that stuff that you put in water and it fizzes, also helps with the joint pain. I would recommend that and plenty of sleep. The joint pain started when I was 24, now almost 28, I still get it.

 

[kristal k]

I have joint pain pretty bad all over. Usually flares up worse during an infection flare up (lung function currently around 30% & I am 31 yrs old) There's actually a really long name for this- "something" pulmonary osteo-arthropathy. This can also be an allergy symptom to something you are eating(poss. wheat sensitivity) or I just found out nightshades can do the same - potatoes, tomatoes, paprika, drugs containing atropine,...- should google. Check out http://cfnaturalhealth.weebly.com/ too, great info on diet & supplements.
I have had this since I was 10 and only got infections twice a yr, but it has gotten worse with the depletion of my lung function. I too notice it more when I'm tapering off of prednisone, when I'm having trouble sleeping or there is a dramatic weather change. There's a bunch of anti-inflammatory drugs that can help. It's quite common in cf... luck!

 

[Kimmiegirl]

Thank you, my little 3 yr old with CF wakes up screaming because of pain in her knee. We have had x-rays and they show nothing, thought maybe it was dehydration.

 

[Jana]

From some things I've read, it sounds like joint pain is not uncommon in cf and can be caused by several different issues. However, it is also a side effect of quinolone drugs such as cipro or levaquin. While that should go away in time, it can take a while. Hope your knees feel better soon!

 

[Epona]

Joint pain is often a sign of an allergy to proteins in grains, legumes, and nightshades called prolamins and lectins. What happens is that maldigestion of these proteins results in them entering the blood stream, and the immune system attacks them as foreign invaders. However, several of your body tissues may look to your immune system like whatever protein got into your blood, and so your immune system attacks your tissues too. For example, gliadin, the protein in wheat, may look like the protein that makes up your joint tissue. This is called an autoimmune disorder, and it is thought that such autoimmune disorders as rhuematoid arthritis and type 1 diabetes are caused by this mechanism. The solution is to stop eating the proteins that are triggering this immune response, i.e. grains, legumes, nightshades, dairy. It would make a lot of sense to me that your joint pain started after a course of antibiotics, since antibiotics mess with your gut flora, which provide you with an intestinal barrier that should prevent these proteins from entering your blood. If your gut flora is compromised, it can no longer provide you with the gut-blood barrier that you need.

To see if this is what is causing your joint pain you might want to try a safe experiment: 1) take a lot of probiotics everyday to restore your gut flora, 2) eliminate prolamins and lectins from your diet (grains, legumes, nightshades, dairy). You should be able to notice some difference within a month. If it doesn't help, then the cause may be elsewhere.

For more info check out my website: cfnaturalhealth.weebly.com

Thanks Kristal for the bump!

-Mikayla

 

[jshet]

My son has cf and also juvenile rheumatoid arthritis. Two separate diagnoisis. If you are seeing swelling in multiple jointsthat has lasted for at least 6 weeks, you should see a rheumatologist. Good luck

 

[LittleLab4CF]

My wife had exploratory knee surgery and at 30 she was diagnosed with endstage osteoarthritis. I am the CFer in this relationship but she had a life changing problem. We both went on glucosamine/condroitin supliments. She did this faithfully at a maximum dosage for fifteen years. I just got bored with added pills and quit after a couple years.

If I went on the results my wife garnered, it improved her joint comfort and seems to have stayed any additional joint damage. Two years after she stopped, her hours of pain free movement were halved. Not all arthritis comes with joint pain. My hands were never painful, the joints just froze to a tiny range of motion. This contrasts my lifetime of painful joints. The kyphosis we all seem to have, has been arthritic since my teens. The dumbest thing was that I just figured, if it bends, that's how it feels. It took a diagnosis of arthritis in my spine to discover it was throughout my body.

Maybe the new class of CFTR moderators can provide relief/help?

LL

 

[nmw0615]

I recently (well, in the past three or so years) went through something similar. I would go to bed fine and wake up with such horrible joint pain I didn't want to move. This was usually accompanied by swollen knuckles and spots that didn't hurt or itch, but were clearly noticeable. I spoke to my CF doctor about it and his belief is that it is CF related arthritis, usually brought on by illness. Just to be sure, he had me see a rheumatologist to test for other types of arthritis and joint diseases. After a couple months of tests and appointments, we're all pretty confident it's the CF related arthritis.

Levaquin is an antibiotic that can produce tendonitis, and unfortunately I can't take it for that reason. If you're on Cirpo or Leva, I'd look into this as well.

Hopefully you can get some answers and start finding a treatment for the pain.