Does anyone else have this?

[leothelioness31]

I started having severe pain everywhere so bad that I can't walk or do anything. It started a couple of years ago. They've had to gradually increase my pain medicines because the pain has been gradually getting worse. On most days the amount of pain medicine I take is enough to keep it tolerable but about once a month for 4 to 5 days in a row I'm in such pain that I can't even open a can of soda. I can barely walk without help or even move my hair off my shoulder without being in agony. My palliative care doctor told me that she sees other people with CF whom have this kind of pain but I don't know of any. I've never met anyone who does. If you have any type of pain that sound similar or someone you know that has both this kind of pain but also has CF please let me know because right now I feel like the only one.

 

[kmhbeauty]

Is it joint pain in all your major joints? I get joint pain really bad when I am feeling run down, havnt slept well, or getting sick. I take an ibuprofen 800mg and also anti inflammatory foods such as turmeric, oranges, ginger ect. What also helps is airborne, that stuff you put in water and it fizzes. If its not joint pain, I am unsure what pain you are talking about.

 

[CyrilCrodius]

Have you ever taken Levaquin or Cipro? They can have nasty long term side effects that pop up randomly long after treatment.

 

[lilmac1177]

i, too, have had experience w/ severe joint pain in all my major joints and it can be pretty debilitating at its worst! ibuprofen helped at first, but after a few bouts of it, ibuprofen nor Naproxen nor diclofenac worked for me; the ONLY medication that gave me relief was Prednisone. as a CF patient, Prednisone is not an ideal long-term solution, so after a Rheumatologist ruled out any auto-immune diseases such as Rheumatoid Arthritis (RA), Lyme, etc, we ultimately came to the diagnosis of CF-Associated Arthritis. i'm now taking Plaquenil (hydroxychloroquine) twice a day, meanwhile weaning off Prednisone (currently down to 2 mg/daily) in hopes the Plaquenil will continue to do the trick on its own

 

[azdesertrat]

Chronic pain is a life-altering ordeal. I had no idea that chronic pain could be caused by my transplant & subsequent removal of most of the donated right lung.
Prior to my transplant, I was already suffering chronic pain because I had a dead left lung.
I've been suffering with chronic pain for better than 10 years now.
Pain meds take the 'edge' off for most of the day, but they keep me from sleeping. It seems that nothing is free.
Nobody ever told me that the price I would pay for the additional years I received from my transplant would be chronic pain.
Sometimes I wonder if the price is too high.
When I see & talk with my beautiful, loving Wife I realize, yea; the price I pay is worth the time I can spend with her. If I didn't have her, I might feel different.
All I can tell you is; hang in there. Try to enjoy all of life you can, despite the pain. I sure hope you have someone in your life like I do. It can make putting up with the pain worthwhile...

 

[Lena Bean]

I have pain like that, I am going to a Rheumatologist in July to try to figure out the cause, I'm almost 22 and have been dealing with it getting increasingly worse since I was 10.

 

[Matt31]

A lot of docs don't understand with cf you can have all the problems of ra an not show all the signs for it. I've had the same prob for yrs now. After prob a 4yr search for a doc that would even help. My cf docs only would give me ib800 @ 8-10 a day. Which was ridiculous an harmful for me. I am on pain med hydro 10mg an has given me my life back for the most part. Unfortunately my doc just retired an the new doc doesn't believe in pain meds on his belief. Now I have to start all over again. Which I know is very hard on my wife an son. Most of all me.

 

[kgfrompa]

I also have pain I have Joint pain and I have so much pain in my lungs I decided for me to have a life I would go on Hydro 5 mil,I have been given 60,000 Magnesium when I was given a blood test and found My Magnesium was low and it could cause Joint pain when I started taking Mag My joints started to feel better. Now my lung pain is mostly because of the 19 chest tubes and so I find the Hydro takes the edge off so I can do and take care of the things that are important to me.

 

[TreasureGoddess]

Have your adrenal levels checked too. My son gets pain all over, not just joints, but just says "I hurt" and can't give an explanation of exactly where. We finally realized his adrenal levels were almost nonexistent. It gets worse while fighting infections, the body just can't seem to provide adrenal functions when he's getting worn down. We now do bouts of predisone steroids in a tapering off dose (to avoid rebound instant pain after he stops). This really makes a difference, but you have to watch blood sugar levels as steroids can cause you to need insulin sometimes. Hang in there and keep asking questions and trying things!

 

[TreasureGoddess]

The main thing is our old center ran out of ideas and told us it was just something my son would have to deal with. It's part of cf. After we switched over, we realized pain is NOT something you need to just deal with. There are options and not all of them make sense. We haven't been able to get rid of all his chronic pain, but by combining steroids when needed, magnesium supplements and soaking in epsom salt baths plus ibuprofen, etc. it has really helped. Often magnesium levels are very low with CF and this is something the body uses to help as a natural muscle relaxant. My son's chest muscles were so overstimulated from the years of coughing that increasing his magnesium has helped his overall pain levels too. best of luck to you!

 

[leothelioness31]

They've figured out that my pain isn't in the joints it's all over. The only thing they've found to make the pain tolerable is extended release morphine by mouth and Percocet. That doesn't get rid of the pain it just makes it where I can make it through the day. I still have days where that doesn't seem to do the trick. All the doctor I see has told me is that some CFs do have arthritis but there are some that have pain that's all over but not in the joints but they don't know what's causing it. She only sees a handful of patients that are going through what I am. I'm looking to see if anyone happens to have this issue and what helps them. My painful days I hurt so bad I can hardly walk without help. I can't open a bottle or a jar or even brush my hair from my shoulder without crying. I do take magnesium for low mag levels but with that my levels are normal. This pain is so bad that I can't enjoy my life at all. I can hardly do anything for myself.

 

[Katie615]

I had joint pain throughout my teenage years, when I was 20 I moved to CA and my doctor here prescribed colchicine (now colcrys) and it all stopped.
My pain was in my hips and shoulders, so it was very debilitating. I would go to the ER in tear and leave pumped full of morphine because they had no idea what the problem was, my x-Rays always comeback fine.
Anyway, the colcrys really helps me and now I only get some shoulder pain occasionally (if it's really cold and/or rainy).
Hope this helps ?