Body Ache

[LeChampion]

Does anyone else experince body ache...almost constantly with their CF? My legs, knees, and shoulders ache all day. A gluten free diet does seem to help, but I hate it. Has any one's doc given meds for this?

 

[jbrandyn]

Yep, I take extra vitamins and magnesium for it and it helps a lot. I guess it has to do with the swelling CF can cause and the different salts that it messes with. I had this and really bad muscle cramps, but the magnesium really helped me. They offer me anti-inflammatories, but I don't want to add more drugs until I really need too.

I also make an herbal tea that seems to help: (in parts by weight 1/10ths of an oz will make a good trial batch) 3 spearmint, 1 rosehips, 1 sage, 2 ginko (stemmed), 1 rosemary, 1 clove, 1 red clover, 1 chamomile. Then I break them up separately with a mortar and pestal so that they are in well broken up, but not a fine powder and the mix them all in a container. I add about 2 teaspoons per liter of hot water. A pinch of stevia (or 1 part premixed) for sweetening since I am diabetic and let it steep for about 30 minutes. There are also good pre-made products or recipes available online. There is probably a psychological component to it, but tea helps me so there ya go.

 

[Lety]

My 7 year old daughter complains a lot about pains on her legs, back, etc. Is this common on kids with CF?

 

[jbrandyn]

So far as I have heard it depends upon the person, some of us have body pain from the CF, some don't. However swelling of joints and back pain is in CF's list of possible symptoms.

 

[Twistofchaos]

Yep, always sore muscles. Our bodies are always up to something (no good) even when we're reasonably healthy and even from coughing.
Weightlifting takes away most of my joint pains though. Also replaces my bad muscle aches with "good" ones..

 

[nocode]

I don´t have body aches, only soul aches. (lame) But yeah... no pain.

 

[TreasureGoddess]

My son gets more body aches when his adrenal levels are very low. His body is able to produce the very minimal levels of adrenaline on its own, but when he has infections raging, they drop off and he just says "I hurt" over and over. We found that adding in steroids at full doses for about 3 days and then tapering off slowly over 2 weeks really helps his pains and energy levels too. Work with an endocrinologist that is CF specific or at least works with CF patients and have blood work done to check the adrenal levels.

I've not tried adding in magnesium, but will ask our CF team about that, thanks!

 

[sabrina77]

Yes, I get really bad pains in my joints about 2-3 times a year. They happen randomly and last about a week. My Cf Dr's think that it is CF related Arthritis. When I get pain flare-ups I am prescribed prednisone.

 

[allonsy]

I'm 47 years old with cf and can remember getting lots of 'leg aches' as a child. I have memories of my grandad massaging and slapping my legs to ease the pain. I quickly grew out of it though and haven't experienced it since. Hope this helps.

 

[CDavis]

My 5 yr old gets legs pains a lot. I'll usually sit by her and massage her legs. My husband and I have thought it was growing pains. We both experienced leg pains while growing up. I'll have to ask our CF Dr. if there could be more to it.