Joint Pain

J

Juniper

Guest
I have just started suffering from joint pain, Never had this before. Over Christmas it was unbearable especially first thing in the morning. I could hardly get out if bed my knees , ankles wrists and even my thumbs hurt i don't think i've ever had such bad pain. I visited the doctors before xmas and got ibuprofen which didn't work. Since then i've been back and started on Diclofenac. I also ache in a flu like way and was taking paracetemol for this. Does anyone know if its ok to take Diclofenac and paracetamol? I'm hoping the pain will ease now. Just wondered if anyone else has had this its come on so suddenly and hopefully it will pass ????
 
J

Juniper

Guest
I have just started suffering from joint pain, Never had this before. Over Christmas it was unbearable especially first thing in the morning. I could hardly get out if bed my knees , ankles wrists and even my thumbs hurt i don't think i've ever had such bad pain. I visited the doctors before xmas and got ibuprofen which didn't work. Since then i've been back and started on Diclofenac. I also ache in a flu like way and was taking paracetemol for this. Does anyone know if its ok to take Diclofenac and paracetamol? I'm hoping the pain will ease now. Just wondered if anyone else has had this its come on so suddenly and hopefully it will pass ????
 

beleache

New member
Hi Julie,<br>I dont have any experience w/ what you have been going through.. Just wanted to say I'm sorry you are in such bad pain & I hope the drs. get it under control !<br>Take care <3 joni
 

beleache

New member
Hi Julie,<br>I dont have any experience w/ what you have been going through.. Just wanted to say I'm sorry you are in such bad pain & I hope the drs. get it under control !<br>Take care <3 joni
 
K

kgfrompa

Guest
<br>I am so sorry you are hurting I hope you find something that works and gets you out of pain.For the last two months I also am having joint pain it wakes me up at night and hurts so bad Its in my feet hands and arms,I have not talked about it to the Doctors because it started after my clinic appointment but I will when I go back.I wonder why CF affects the joints and I wonder how many of the cf coummunity has this joint pain.I am on percert for my lungs right now but I hate any narcotics and plan on weaning off as so as possible.I will be following to see other comments and thanks for the post Hope the meds work for you
 
K

kgfrompa

Guest
<br>I am so sorry you are hurting I hope you find something that works and gets you out of pain.For the last two months I also am having joint pain it wakes me up at night and hurts so bad Its in my feet hands and arms,I have not talked about it to the Doctors because it started after my clinic appointment but I will when I go back.I wonder why CF affects the joints and I wonder how many of the cf coummunity has this joint pain.I am on percert for my lungs right now but I hate any narcotics and plan on weaning off as so as possible.I will be following to see other comments and thanks for the post Hope the meds work for you
 
J

Juniper

Guest
Thanks for the support . Thats why i posted as i have heard of CF affecting joint but didn't know if anyone else was suffering in the same way. I popped down and spoke to my pharmacist today and she said i can take paracetamol as well so i do feel slightly better tonight as the flu like aches have gone and my joint pain is not as bad so here's hoping !!!
 
J

Juniper

Guest
Thanks for the support . Thats why i posted as i have heard of CF affecting joint but didn't know if anyone else was suffering in the same way. I popped down and spoke to my pharmacist today and she said i can take paracetamol as well so i do feel slightly better tonight as the flu like aches have gone and my joint pain is not as bad so here's hoping !!!
 

TheAmazingBD

New member
JOINT PAIN.... Lengthy story made short. I started having inflammation in 2005. It has come on gradually worse at every episode since then. First it was just my ankles and wrists, then it got to my knees and elbows and once I had a full on GOUT attack. I've had the episode happen about 12x in 6 years and they are getting more frequent and more severe. 2 weeks ago it was in ever single joint in my body so dibilitating I went to the ER. That's actually the 3rd ER visit. They have diagnosed me with UNdifferentiated Inflammatory Disorder which means: I have symptoms of various types of autoimmune disorders like rheumatoid arthritus and reynaud's phenomina, but no blood work confirms any of the above. The CF clinic has no explanation nor does the rheumatologist, endrocronoligist, neurologist or infectious disease specialist. They gave me Prednisone for 7 days and ibuprophen as well as IV narcotics. The pain and swelling went down over 3 days. In past, I've not gone to the hospital and not taken any medication(I'm not an advocate of medication) and the pain and swelling subsides on it's own in about 7 to 10 days. I have no idea what it is or what causes it. I've not linked it to food, medication, exercise, or anything else. It just comes on and goes away.

I'm sorry to hear you are encountering a similar issue. Maybe it is related to CF and they need to do a study on the subject? I hope your post draws out other people so we can all find some answers. In the meantime i hope you are feeling better and you find some relief.

On a natural healing note I make a HOT tea out of apple cider vinegar and Mullin and make compresses for my joints. That eases the pain without drugs.

bless
 

TheAmazingBD

New member
JOINT PAIN.... Lengthy story made short. I started having inflammation in 2005. It has come on gradually worse at every episode since then. First it was just my ankles and wrists, then it got to my knees and elbows and once I had a full on GOUT attack. I've had the episode happen about 12x in 6 years and they are getting more frequent and more severe. 2 weeks ago it was in ever single joint in my body so dibilitating I went to the ER. That's actually the 3rd ER visit. They have diagnosed me with UNdifferentiated Inflammatory Disorder which means: I have symptoms of various types of autoimmune disorders like rheumatoid arthritus and reynaud's phenomina, but no blood work confirms any of the above. The CF clinic has no explanation nor does the rheumatologist, endrocronoligist, neurologist or infectious disease specialist. They gave me Prednisone for 7 days and ibuprophen as well as IV narcotics. The pain and swelling went down over 3 days. In past, I've not gone to the hospital and not taken any medication(I'm not an advocate of medication) and the pain and swelling subsides on it's own in about 7 to 10 days. I have no idea what it is or what causes it. I've not linked it to food, medication, exercise, or anything else. It just comes on and goes away.

I'm sorry to hear you are encountering a similar issue. Maybe it is related to CF and they need to do a study on the subject? I hope your post draws out other people so we can all find some answers. In the meantime i hope you are feeling better and you find some relief.

On a natural healing note I make a HOT tea out of apple cider vinegar and Mullin and make compresses for my joints. That eases the pain without drugs.

bless
 

Gammaw

Super Moderator
What are your Vitamin D levels? If on even the low end of OK, I understand it can still cause joint pain. Just a thought. God bless and keep you from pain.
 

Gammaw

Super Moderator
What are your Vitamin D levels? If on even the low end of OK, I understand it can still cause joint pain. Just a thought. God bless and keep you from pain.
 

Daisymae1997

New member
I've had joint and muscle pain for several years.

The cf doc blamed it on low vitamin D and an inflammatory response to the infection in my lungs. Once I started Replesta, the vitamin D levels returned to normal. The pain did not go away. Now the doc claims it is cf related arthritis.

Now I've started seeing a rheumatologist. She put me on plaquenil and told me it could be 6 months before I see results. She also has given me lidoderm patches and flector patches. I've been on the plaquenil for over 6 months with no change or possibly worse. My cf doc is thrilled with the patches, but he doesn't have to wear them. They do numb where you put them for 12 hours, but they are squishy and messy and the sides peel and catch on clothing. I also have taken 1200 mg of ibuprofen twice a day in the past and now I've switched to 2 aleve twice a day, recommended by the cf doc. That just takes the edge off.

I am watching this thread with interest.

Karen
 

Daisymae1997

New member
I've had joint and muscle pain for several years.

The cf doc blamed it on low vitamin D and an inflammatory response to the infection in my lungs. Once I started Replesta, the vitamin D levels returned to normal. The pain did not go away. Now the doc claims it is cf related arthritis.

Now I've started seeing a rheumatologist. She put me on plaquenil and told me it could be 6 months before I see results. She also has given me lidoderm patches and flector patches. I've been on the plaquenil for over 6 months with no change or possibly worse. My cf doc is thrilled with the patches, but he doesn't have to wear them. They do numb where you put them for 12 hours, but they are squishy and messy and the sides peel and catch on clothing. I also have taken 1200 mg of ibuprofen twice a day in the past and now I've switched to 2 aleve twice a day, recommended by the cf doc. That just takes the edge off.

I am watching this thread with interest.

Karen
 

aqtq97

New member
<br>My CF doctor said they have several patients with rheumatoid arthritis. Mine came on suddenly as well. And the thumb pain is horrible! Make sure you follow up with an arthritis doctor so they can tryto figure it out. Unfortunately it make take a long time to come up with the correct combination of meds to help treat it. I am going on two years and still working on it. Good luck with it! Hope you feel better soon.
 

aqtq97

New member
<br>My CF doctor said they have several patients with rheumatoid arthritis. Mine came on suddenly as well. And the thumb pain is horrible! Make sure you follow up with an arthritis doctor so they can tryto figure it out. Unfortunately it make take a long time to come up with the correct combination of meds to help treat it. I am going on two years and still working on it. Good luck with it! Hope you feel better soon.
 
W

windex125

Guest
I am as well suffering in pain for abt 3 wks now. I coughed as I was bendingto pick up something from the floor and got this sharp pain down my left leg and it has not left. I was diagnosed with sitica and also have had the worst tingling in my left hand feels like needles on and off all day. I am suppossed to go for 2 MRI's in Jan but not sure I will go though with that, I know sitica pain has to work itself out as I had it 3yrs ago and it took over 2mts. But I am mentally a mess as another thing to deal with. I am using the pain patches and was told to take Motrin but it upsets my stomach, so I am going back to Aleive as well. I did not make the connection with the joint pain and the CF but I see it does do hand in hand my last scan also showed thinning of the bones? Not good. I am sick of all this up keep, it makes me extremely sad. Pat-57/CF
 
W

windex125

Guest
I am as well suffering in pain for abt 3 wks now. I coughed as I was bendingto pick up something from the floor and got this sharp pain down my left leg and it has not left. I was diagnosed with sitica and also have had the worst tingling in my left hand feels like needles on and off all day. I am suppossed to go for 2 MRI's in Jan but not sure I will go though with that, I know sitica pain has to work itself out as I had it 3yrs ago and it took over 2mts. But I am mentally a mess as another thing to deal with. I am using the pain patches and was told to take Motrin but it upsets my stomach, so I am going back to Aleive as well. I did not make the connection with the joint pain and the CF but I see it does do hand in hand my last scan also showed thinning of the bones? Not good. I am sick of all this up keep, it makes me extremely sad. Pat-57/CF
 

JustDucky

New member
I too suffer chronic joint pain....my pulmo says it is partly because my lungs are always inflamed from chronic infection, my body is simply in overdrive. I also have Ehlers Danlos, which makes my joints slip out of place easily, it is inherited as well, makes me hypermobile (I am very bendy).....unfortunately, pain is also part of this syndrome. So basically, it is a double whammy for me. I take ibuprofen regularly, I also am on narcotics as my pain was spiraling out of control....every other measure was not working to dull it. Currently, I am on Fentanyl patches....they were last resort, but I truly felt like I was there. I do feel relief from them. I also take break through pain medications as there are times when the pain becomes severe, like whenever I am actively sick and on IV's. Sheets on my body becomes too much then, it really gets that bad at times.

I hope you find relief...sounds like you are not alone and this seems to happen to us CF'ers alot. I am fortunate that my doctor is aggressive with my pain relief, I know that I would be out of my mind if it wasn't dealt with. I also find showers soothing, as hot as you can stand. Seems to help some.

Sending hugs,
Jenn 40 w/CF
 

JustDucky

New member
I too suffer chronic joint pain....my pulmo says it is partly because my lungs are always inflamed from chronic infection, my body is simply in overdrive. I also have Ehlers Danlos, which makes my joints slip out of place easily, it is inherited as well, makes me hypermobile (I am very bendy).....unfortunately, pain is also part of this syndrome. So basically, it is a double whammy for me. I take ibuprofen regularly, I also am on narcotics as my pain was spiraling out of control....every other measure was not working to dull it. Currently, I am on Fentanyl patches....they were last resort, but I truly felt like I was there. I do feel relief from them. I also take break through pain medications as there are times when the pain becomes severe, like whenever I am actively sick and on IV's. Sheets on my body becomes too much then, it really gets that bad at times.

I hope you find relief...sounds like you are not alone and this seems to happen to us CF'ers alot. I am fortunate that my doctor is aggressive with my pain relief, I know that I would be out of my mind if it wasn't dealt with. I also find showers soothing, as hot as you can stand. Seems to help some.

Sending hugs,
Jenn 40 w/CF
 
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