Need input..what do you do????

J

JennifersHope

New member
Hi,

I know this has been talked about before but I can't find any posts on it with the specific question I have... I am having terrible trouble with bone/muscle pain.. I do have ostoporosis but every once in a while... I get what seems to be a "flare up" and my normal aches and pains go from very tolerable to unbearable... It interferes with my sleep, and makes me really miserable....

I don't know what it is, but I know a lot of you have CF related arthritis and other pains.. Right now I am taking 1000 mgs of advil and 875 mgs of tylenol.. every four to six hours... taking hot baths etc... What meds do you guys take for your pain??? I am almost getting to the point where when I have these flare ups, I would even take narcotics or something.. but prefer not to....so apart from what I am already doing, any suggestions????

The pain seems to be evenly distrubuted in all my joints from shoulders to toes.....

Thanks for any help.. You guys always have great ideas and I could really use them at this point...

Jennifer
 
A

Allie

New member
Have you tried really gentle massage for tight muscles? Sometimes that helps, as the bloodflow increases, it helps take away the pain.

I hope this helps and you find some relief from this.
 
M

mare

New member
Have you ever been tested for Lyme disease or Ehrlichia? I dont know what part of the country you live in but here in CT Tick borne illness is VERY common. Just because we have CF doesnt mean we cant get anything else. I do get arthritic symptoms alot, have had problems with neck pain and back pain. At one point it was so back I looked into Accupuncture. That did the trick, pain went away. What does your DR have to say about the pains?
 
K

kybert

New member
sorry i dont have any auggestions <img src="i/expressions/face-icon-small-sad.gif" border="0"> i do the same as what you do. ibuprofen and hot showers when my aches flare up. if that doesnt work i end up taking ibuprofen+codeine. and if that doesnt work i just curl up in a ball and whinge lol.
 
D

Dea

New member
Jennifer,
I am sorry to hear that you are having these problems. To me, it does sound like CF related arthritis. I have suffered from it since I was 9 and am now 32...so I understand how you feel. I took celebrex for approx. 3 yrs for mine until it quit working....but it did great for quite some time. Ibuprofen and tylenol doesnt even touch the pain anymore. I now have to take up to 30 mg of prednisone when I get a flare up...and now even that doesnt seem to be helping. I cant give you any more help either...I have been to a rheumatologist and the several medications for arthritis did not work for me. I absolutely love sitting in a hot bath..and have given serious thought to purchasing a hot tub for that reason. Im sorry I cant help you much more .....Take Care!
Dea
 
I

IG

Guest
If it's like really sharp muscle pains, that have the tendency to wake you up at night. Or if your muscles just feel really tight, etc. You might see about having your magnesium levels checked. My legs would cramp up at night and pull me out of a sound sleep, the pain felt like a really sharp knife slicing into my muscle. Come to find out my body was really lacking in magnesium, I notice if I go off it for long periods it'll do that to me again. Lack of magnesium in my diet I guess.
 
J

JazzysMom

New member
Candice.....Magnesium or Potassium? Just wondering because my Mom always told me to eat bananas if I got muscle cramps.
 
A

anonymous

New member
I had the same problems starting with my knees at age 14, then had it spreading to just about every joint and muscle in my body. Knees, hands and feet have been the worst.

Not until I couldn't press the button on my nebulizer did my doctors instigate the problem (I was 23 then).

They tried out every imaginable (and unimaginable) painkiller out there, they sent me to some strange sort of "pain school", even tried treating me with anti-depressives.

And, frankly, nothing helped until I was put on Morphine (10mg pills, sometimes one a day, sometimes four) with a 500mg Paracetamol chaser.

I was at first hesitant to using Morphine but the pain actually went away (for most parts) and as a nice little bonus the chest pains were relieved too!

Ginny, W/CF, 29, Sweden
 
J

JennifersHope

New member
Thanks for your input guys.. I am going to get another bone scan and maybe an MRI... I have tried massage and that does help sometimes but I can't afford to get massages often. They are so expensive... I don't think I have lymes disease, though I live in NJ where it is common.. but I guess they can check if it continues.

Kylie.. I have been curled up in a ball wincing for a while now.. so I know how you feel..

I think they took Celebrex off the market didn't they???

I also think I will get my Mag and Potassium levels checked, I am do...

I am not going to take Morphine because I have to much to do, can't afford to be drowsy but I will keep that in mind.

I really feel dumb for complaining about something so minor but it really is uncomfortable...

Thanks agian for any advice....

Jennifer
 
A

anonymous

New member
I've had CF related arthritis since I was about five years old. Several times a year I have "flare-ups", at which point not much helps until it just goes away. The flare ups in my joints tend to happen when my lung infection is flared and/or I am on IV antibiotics. Usually on a daily basis I manage most arthritis related pain with 200 mg of Celebrex.
 
I

IG

Guest
Magnesium [sorry I didn't see this earlier Melissa]
They have me on straight magnesium for it so I know it's magnesium for sure.
 
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