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Juniper...I am so glad that there are studies being done on this! I would be very interested on the findings....As far as debilitating pain, I find that it is most severe with infections and I can't do anything whenever that happens, even with pain meds on board. The housework doesn't get done...

Juniper...I am so glad that there are studies being done on this! I would be very interested on the findings....As far as debilitating pain, I find that it is most severe with infections and I can't do anything whenever that happens, even with pain meds on board. The housework doesn't get done...

To Matt....I have been on pain meds chronically for years, so I am on higher doses than what would be prescribed initially.. I am on a Fentanyl patch, 100 mcg/hr (started at 25 mcg years ago, but as time went on, I have needed more to cover my baseline pain) and dilaudid 2 to 4 mg every 4 hrs (I...

To Matt....I have been on pain meds chronically for years, so I am on higher doses than what would be prescribed initially.. I am on a Fentanyl patch, 100 mcg/hr (started at 25 mcg years ago, but as time went on, I have needed more to cover my baseline pain) and dilaudid 2 to 4 mg every 4 hrs (I...

They shouldn't just say they can't help....they can! Perhaps they should refer you to pain management to help with your pain. Unfortunately, blood tests come back okay but the pain is very real....docs basically have to go on what you say in this case. Have you been to a rheumatologist who is...

They shouldn't just say they can't help....they can! Perhaps they should refer you to pain management to help with your pain. Unfortunately, blood tests come back okay but the pain is very real....docs basically have to go on what you say in this case. Have you been to a rheumatologist who is...

Late Diagnosis of atypical or First of all, you did not get the most complete genetic testing there is for CF....from what I understand, there are over 1600 mutations out there. Both Ambry and Quest labs performs this particular test that covers all known CF mutations. If I were you, I would...

Late Diagnosis of atypical or First of all, you did not get the most complete genetic testing there is for CF....from what I understand, there are over 1600 mutations out there. Both Ambry and Quest labs performs this particular test that covers all known CF mutations. If I were you, I would...

Cool article about Cystic Fibrosis and Awesome...you are such an inspiration! Keep up the amazing work that you do <img src="i/expressions/face-icon-small-smile.gif" border="0"> Jenn 40 w/CF

Cool article about Cystic Fibrosis and Awesome...you are such an inspiration! Keep up the amazing work that you do <img src="i/expressions/face-icon-small-smile.gif" border="0"> Jenn 40 w/CF

Unfortunately I do have chronic joint and muscle pain. In answer to your questions: 1.) I have another condition that exacerbates joint/muscle pain. Years ago, doctors thought that I had fibromyalgia but that diagnosis has been changed as of a few years ago. I have Ehlers-Danlos syndrome which...

Unfortunately I do have chronic joint and muscle pain. In answer to your questions: 1.) I have another condition that exacerbates joint/muscle pain. Years ago, doctors thought that I had fibromyalgia but that diagnosis has been changed as of a few years ago. I have Ehlers-Danlos syndrome which...

Yes, I am also back on IV's....my third round since November. I just can't seem to get back to baseline. I feel the weakness too, especially in the first week of IV's.. I have no energy....I think it is a combination of feeling lousy, the IV's and the lack of sleep because of the IV schedule...

Yes, I am also back on IV's....my third round since November. I just can't seem to get back to baseline. I feel the weakness too, especially in the first week of IV's.. I have no energy....I think it is a combination of feeling lousy, the IV's and the lack of sleep because of the IV schedule...

I wonder if they will give you medicaid if you dad says that you rent off of him, that he doesn't pay for any of your expenses. My mother lives with my brother and that's how she gets medicaid. My brother basically wrote a letter saying that she paid x amount a month for rent, x amount for food...

I wonder if they will give you medicaid if you dad says that you rent off of him, that he doesn't pay for any of your expenses. My mother lives with my brother and that's how she gets medicaid. My brother basically wrote a letter saying that she paid x amount a month for rent, x amount for food...

Anyone have a good workout plan that has helped you gain muscle back in your body?..as well as brought you Fev %up? If you can, try pulmonary rehab....that way, your O2 is monitored and tweaked accordingly. Also, you will learn some beneficial exercises as well as breathing techniques. Once you...

Anyone have a good workout plan that has helped you gain muscle back in your body?..as well as brought you Fev %up? If you can, try pulmonary rehab....that way, your O2 is monitored and tweaked accordingly. Also, you will learn some beneficial exercises as well as breathing techniques. Once you...

Yep...I have Ehlers-Danlos Syndrome, it is actually less common than CF. Basically causes joints to dislocate at will, stretchy skin, high palate, really bad eyesight as well as a cardiac problems. As I always say, I was doubly blessed! The only other possibly genetic issue that I have is...

Yep...I have Ehlers-Danlos Syndrome, it is actually less common than CF. Basically causes joints to dislocate at will, stretchy skin, high palate, really bad eyesight as well as a cardiac problems. As I always say, I was doubly blessed! The only other possibly genetic issue that I have is...