pain in legs and headaches

jesta36 · Mar 1, 2009

im 30 with cf dx at birth.. i used to be able to skateboard easily. ive had 4 pulmonary embolizations in the past 2-3 yrs bkuz of constant hemoptisis. last yr in sept i had sinus surgery and they got to close to an artery and i almost bled to death a couple weeks after surgery. im more anemic now and costantly have pain in my legs. i can hardly stand for long periods of time now for the pain gets bad,the pain has been around for acouple yrs but recently its been worse. ive been out of work since july for home ivs and constant surgeries. i cough so hard i have headaches to the point of migraines, this also has been going on for a couple yrs but recently its worse. what i want to ask is, do any people with CF have any leg pains to the point u cant get outta bed somtimes or headaches that last all day?
thanx
One Love
jay

jesta36 · Mar 1, 2009

im 30 with cf dx at birth.. i used to be able to skateboard easily. ive had 4 pulmonary embolizations in the past 2-3 yrs bkuz of constant hemoptisis. last yr in sept i had sinus surgery and they got to close to an artery and i almost bled to death a couple weeks after surgery. im more anemic now and costantly have pain in my legs. i can hardly stand for long periods of time now for the pain gets bad,the pain has been around for acouple yrs but recently its been worse. ive been out of work since july for home ivs and constant surgeries. i cough so hard i have headaches to the point of migraines, this also has been going on for a couple yrs but recently its worse. what i want to ask is, do any people with CF have any leg pains to the point u cant get outta bed somtimes or headaches that last all day?
thanx
One Love
jay

jesta36 · Mar 1, 2009

im 30 with cf dx at birth.. i used to be able to skateboard easily. ive had 4 pulmonary embolizations in the past 2-3 yrs bkuz of constant hemoptisis. last yr in sept i had sinus surgery and they got to close to an artery and i almost bled to death a couple weeks after surgery. im more anemic now and costantly have pain in my legs. i can hardly stand for long periods of time now for the pain gets bad,the pain has been around for acouple yrs but recently its been worse. ive been out of work since july for home ivs and constant surgeries. i cough so hard i have headaches to the point of migraines, this also has been going on for a couple yrs but recently its worse. what i want to ask is, do any people with CF have any leg pains to the point u cant get outta bed somtimes or headaches that last all day?
thanx
One Love
jay

jesta36 · Mar 1, 2009

im 30 with cf dx at birth.. i used to be able to skateboard easily. ive had 4 pulmonary embolizations in the past 2-3 yrs bkuz of constant hemoptisis. last yr in sept i had sinus surgery and they got to close to an artery and i almost bled to death a couple weeks after surgery. im more anemic now and costantly have pain in my legs. i can hardly stand for long periods of time now for the pain gets bad,the pain has been around for acouple yrs but recently its been worse. ive been out of work since july for home ivs and constant surgeries. i cough so hard i have headaches to the point of migraines, this also has been going on for a couple yrs but recently its worse. what i want to ask is, do any people with CF have any leg pains to the point u cant get outta bed somtimes or headaches that last all day?
thanx
One Love
jay

jesta36 · Mar 1, 2009

im 30 with cf dx at birth.. i used to be able to skateboard easily. ive had 4 pulmonary embolizations in the past 2-3 yrs bkuz of constant hemoptisis. last yr in sept i had sinus surgery and they got to close to an artery and i almost bled to death a couple weeks after surgery. im more anemic now and costantly have pain in my legs. i can hardly stand for long periods of time now for the pain gets bad,the pain has been around for acouple yrs but recently its been worse. ive been out of work since july for home ivs and constant surgeries. i cough so hard i have headaches to the point of migraines, this also has been going on for a couple yrs but recently its worse. what i want to ask is, do any people with CF have any leg pains to the point u cant get outta bed somtimes or headaches that last all day?
 thanx
 One Love
 jay

mamaScarlett · Mar 1, 2009

i have leg pain and leg swelling, rashes and bruises.

i've been to several doctors about it and after 6 years of investigation have never received conclusive information or diagnosis on what i have. they know its some type of vasculitis, and partly cf related arthritis.

i culture bcepacia and a few doctors think my vasculitic problems are related to cepacia.

do you only have pain-or are there other symptoms?

you could have cf related arthritis, or any number of things.

i wouldn't keep quiet about it. tell your doctors all your symptoms, and try to make a note of when you have pain-things that possibly trigger it, things that relieve it, ect. the fact that you haven't been feeling well cf wise lately could suggest its cf related leg pain.

one thing i know is that you are not alone. there's alot of patients with problems like this.

mamaScarlett · Mar 1, 2009

i have leg pain and leg swelling, rashes and bruises.

i've been to several doctors about it and after 6 years of investigation have never received conclusive information or diagnosis on what i have. they know its some type of vasculitis, and partly cf related arthritis.

i culture bcepacia and a few doctors think my vasculitic problems are related to cepacia.

do you only have pain-or are there other symptoms?

you could have cf related arthritis, or any number of things.

i wouldn't keep quiet about it. tell your doctors all your symptoms, and try to make a note of when you have pain-things that possibly trigger it, things that relieve it, ect. the fact that you haven't been feeling well cf wise lately could suggest its cf related leg pain.

one thing i know is that you are not alone. there's alot of patients with problems like this.

mamaScarlett · Mar 1, 2009

i have leg pain and leg swelling, rashes and bruises.

i've been to several doctors about it and after 6 years of investigation have never received conclusive information or diagnosis on what i have. they know its some type of vasculitis, and partly cf related arthritis.

i culture bcepacia and a few doctors think my vasculitic problems are related to cepacia.

do you only have pain-or are there other symptoms?

you could have cf related arthritis, or any number of things.

i wouldn't keep quiet about it. tell your doctors all your symptoms, and try to make a note of when you have pain-things that possibly trigger it, things that relieve it, ect. the fact that you haven't been feeling well cf wise lately could suggest its cf related leg pain.

one thing i know is that you are not alone. there's alot of patients with problems like this.

mamaScarlett · Mar 1, 2009

i have leg pain and leg swelling, rashes and bruises.

i've been to several doctors about it and after 6 years of investigation have never received conclusive information or diagnosis on what i have. they know its some type of vasculitis, and partly cf related arthritis.

i culture bcepacia and a few doctors think my vasculitic problems are related to cepacia.

do you only have pain-or are there other symptoms?

you could have cf related arthritis, or any number of things.

i wouldn't keep quiet about it. tell your doctors all your symptoms, and try to make a note of when you have pain-things that possibly trigger it, things that relieve it, ect. the fact that you haven't been feeling well cf wise lately could suggest its cf related leg pain.

one thing i know is that you are not alone. there's alot of patients with problems like this.

mamaScarlett · Mar 1, 2009

i have leg pain and leg swelling, rashes and bruises.
 
 i've been to several doctors about it and after 6 years of investigation have never received conclusive information or diagnosis on what i have. they know its some type of vasculitis, and partly cf related arthritis.
 
 i culture bcepacia and a few doctors think my vasculitic problems are related to cepacia.
 
 do you only have pain-or are there other symptoms?
 
 you could have cf related arthritis, or any number of things.
 
 i wouldn't keep quiet about it. tell your doctors all your symptoms, and try to make a note of when you have pain-things that possibly trigger it, things that relieve it, ect. the fact that you haven't been feeling well cf wise lately could suggest its cf related leg pain.
 
 one thing i know is that you are not alone. there's alot of patients with problems like this.

nu65 · Mar 1, 2009

I don't have leg pain, but sometimes I feel like the skin on my feet and legs crawl at night when I'm trying to get to sleep. Sorry I can't help with that.
I get headaches from huge bouts of coughing sometimes. The blood rushes to your head when we cough as hard as we do, so headaches are common. But if you haven't already, I'd see an ENT to rule out sinus issues. I know, its another doctor to have to go do, but when my sinuses are full of stuff, I get headaches that last all afternoon. When they clear them out, it feels great. Hope this helps.

nu65 · Mar 1, 2009

I don't have leg pain, but sometimes I feel like the skin on my feet and legs crawl at night when I'm trying to get to sleep. Sorry I can't help with that.
I get headaches from huge bouts of coughing sometimes. The blood rushes to your head when we cough as hard as we do, so headaches are common. But if you haven't already, I'd see an ENT to rule out sinus issues. I know, its another doctor to have to go do, but when my sinuses are full of stuff, I get headaches that last all afternoon. When they clear them out, it feels great. Hope this helps.

nu65 · Mar 1, 2009

I don't have leg pain, but sometimes I feel like the skin on my feet and legs crawl at night when I'm trying to get to sleep. Sorry I can't help with that.
I get headaches from huge bouts of coughing sometimes. The blood rushes to your head when we cough as hard as we do, so headaches are common. But if you haven't already, I'd see an ENT to rule out sinus issues. I know, its another doctor to have to go do, but when my sinuses are full of stuff, I get headaches that last all afternoon. When they clear them out, it feels great. Hope this helps.

nu65 · Mar 1, 2009

I don't have leg pain, but sometimes I feel like the skin on my feet and legs crawl at night when I'm trying to get to sleep. Sorry I can't help with that.
I get headaches from huge bouts of coughing sometimes. The blood rushes to your head when we cough as hard as we do, so headaches are common. But if you haven't already, I'd see an ENT to rule out sinus issues. I know, its another doctor to have to go do, but when my sinuses are full of stuff, I get headaches that last all afternoon. When they clear them out, it feels great. Hope this helps.

nu65 · Mar 1, 2009

I don't have leg pain, but sometimes I feel like the skin on my feet and legs crawl at night when I'm trying to get to sleep. Sorry I can't help with that.
 I get headaches from huge bouts of coughing sometimes. The blood rushes to your head when we cough as hard as we do, so headaches are common. But if you haven't already, I'd see an ENT to rule out sinus issues. I know, its another doctor to have to go do, but when my sinuses are full of stuff, I get headaches that last all afternoon. When they clear them out, it feels great. Hope this helps.

coltsfan715 · Mar 2, 2009

The first thought that came to my mind was oxgen levels.

I only bring this up because as my health was worsening I would get headaches more frequently and they were literally at times unbearable I couldn't open my eyes or anything they felt like migraines. Turned out I got them mostly in the morning and it was a result of my desaturating at night during my sleep.

After I started oxygen at night I then realized I was extremely weak during the day and simple things like just walking made my leg muscles scream in pain. Sometimes I would just get weak and feel like my legs were going to give out on me. I decided one day to use my O2 while walking on the treadmill and I didn't get the weakness as usual. Turned out that I needed oxygen while I exercised as well.

I would just maybe ask your doc if you could have a pulseox test done maybe while you are sleeping and then maybe an exercise study to see if you need oxygen for exertion. You may not seem like you need oxygen but I would ask for the test either way. It won't hurt and this way you can be sure it is or is not the oxygen issue. I complained of these symptoms for months and my docs never recommended an O2 test. I had to ask for it and it turned out to be something I needed.

I hope that it isn't that but just wanted to put it out there just in case.

Also it maybe oxygen because when you have bad coughing fits you kind of are not breathing properly if at all. I know I would get red in the face because I was barely breathing when I had coughing fits. So that may be why you get the headaches after coughing fits.

Take Care,
Lindsey

coltsfan715 · Mar 2, 2009

The first thought that came to my mind was oxgen levels.

I only bring this up because as my health was worsening I would get headaches more frequently and they were literally at times unbearable I couldn't open my eyes or anything they felt like migraines. Turned out I got them mostly in the morning and it was a result of my desaturating at night during my sleep.

After I started oxygen at night I then realized I was extremely weak during the day and simple things like just walking made my leg muscles scream in pain. Sometimes I would just get weak and feel like my legs were going to give out on me. I decided one day to use my O2 while walking on the treadmill and I didn't get the weakness as usual. Turned out that I needed oxygen while I exercised as well.

I would just maybe ask your doc if you could have a pulseox test done maybe while you are sleeping and then maybe an exercise study to see if you need oxygen for exertion. You may not seem like you need oxygen but I would ask for the test either way. It won't hurt and this way you can be sure it is or is not the oxygen issue. I complained of these symptoms for months and my docs never recommended an O2 test. I had to ask for it and it turned out to be something I needed.

I hope that it isn't that but just wanted to put it out there just in case.

Also it maybe oxygen because when you have bad coughing fits you kind of are not breathing properly if at all. I know I would get red in the face because I was barely breathing when I had coughing fits. So that may be why you get the headaches after coughing fits.

Take Care,
Lindsey

coltsfan715 · Mar 2, 2009

The first thought that came to my mind was oxgen levels.

I only bring this up because as my health was worsening I would get headaches more frequently and they were literally at times unbearable I couldn't open my eyes or anything they felt like migraines. Turned out I got them mostly in the morning and it was a result of my desaturating at night during my sleep.

After I started oxygen at night I then realized I was extremely weak during the day and simple things like just walking made my leg muscles scream in pain. Sometimes I would just get weak and feel like my legs were going to give out on me. I decided one day to use my O2 while walking on the treadmill and I didn't get the weakness as usual. Turned out that I needed oxygen while I exercised as well.

I would just maybe ask your doc if you could have a pulseox test done maybe while you are sleeping and then maybe an exercise study to see if you need oxygen for exertion. You may not seem like you need oxygen but I would ask for the test either way. It won't hurt and this way you can be sure it is or is not the oxygen issue. I complained of these symptoms for months and my docs never recommended an O2 test. I had to ask for it and it turned out to be something I needed.

I hope that it isn't that but just wanted to put it out there just in case.

Also it maybe oxygen because when you have bad coughing fits you kind of are not breathing properly if at all. I know I would get red in the face because I was barely breathing when I had coughing fits. So that may be why you get the headaches after coughing fits.

Take Care,
Lindsey

coltsfan715 · Mar 2, 2009

The first thought that came to my mind was oxgen levels.

I only bring this up because as my health was worsening I would get headaches more frequently and they were literally at times unbearable I couldn't open my eyes or anything they felt like migraines. Turned out I got them mostly in the morning and it was a result of my desaturating at night during my sleep.

After I started oxygen at night I then realized I was extremely weak during the day and simple things like just walking made my leg muscles scream in pain. Sometimes I would just get weak and feel like my legs were going to give out on me. I decided one day to use my O2 while walking on the treadmill and I didn't get the weakness as usual. Turned out that I needed oxygen while I exercised as well.

I would just maybe ask your doc if you could have a pulseox test done maybe while you are sleeping and then maybe an exercise study to see if you need oxygen for exertion. You may not seem like you need oxygen but I would ask for the test either way. It won't hurt and this way you can be sure it is or is not the oxygen issue. I complained of these symptoms for months and my docs never recommended an O2 test. I had to ask for it and it turned out to be something I needed.

I hope that it isn't that but just wanted to put it out there just in case.

Also it maybe oxygen because when you have bad coughing fits you kind of are not breathing properly if at all. I know I would get red in the face because I was barely breathing when I had coughing fits. So that may be why you get the headaches after coughing fits.

Take Care,
Lindsey

coltsfan715 · Mar 2, 2009

The first thought that came to my mind was oxgen levels.
 
 I only bring this up because as my health was worsening I would get headaches more frequently and they were literally at times unbearable I couldn't open my eyes or anything they felt like migraines. Turned out I got them mostly in the morning and it was a result of my desaturating at night during my sleep.
 
 After I started oxygen at night I then realized I was extremely weak during the day and simple things like just walking made my leg muscles scream in pain. Sometimes I would just get weak and feel like my legs were going to give out on me. I decided one day to use my O2 while walking on the treadmill and I didn't get the weakness as usual. Turned out that I needed oxygen while I exercised as well.
 
 I would just maybe ask your doc if you could have a pulseox test done maybe while you are sleeping and then maybe an exercise study to see if you need oxygen for exertion. You may not seem like you need oxygen but I would ask for the test either way. It won't hurt and this way you can be sure it is or is not the oxygen issue. I complained of these symptoms for months and my docs never recommended an O2 test. I had to ask for it and it turned out to be something I needed.
 
 I hope that it isn't that but just wanted to put it out there just in case.
 
 Also it maybe oxygen because when you have bad coughing fits you kind of are not breathing properly if at all. I know I would get red in the face because I was barely breathing when I had coughing fits. So that may be why you get the headaches after coughing fits.
 
 Take Care,
 Lindsey

pain in legs and headaches

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