Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Hi Geri,  Yes, this happens to me. I have degenerative joint disease in ankles, hips, and knees - due to CMT weakness.  The swelling is most obvious in my knees. The swelling never goes away, just gets worse with activity.  My hips swell around the front tendon area, diagnosed a few years ago as Iliopsoas tendonitis. With the ankles, the swelling is also primarly around the tendons - looks and feels like a mildly sprained ankle. Pain and swelling is much worse in hips and knees. Activity puts me in bed for days, especially if the activity isn't something the body is accustomed to doing.  In your previous email, you also asked about numbness, which is why I didn't respond initially. I don't have CMT-related numbness in my legs. My CMT nerve symptoms include burning/irritation in limbs, not numbness. These nerve symptoms also get worse with activity.  I have no swelling in my thighs/calves, just the joints. If your daughter's swelling (edema) is in the soft tissue rather than the joints, then I'd definitely have a doctor check it out to make sure there's not something else going on. I've heard some say that CMT can cause this, but it can also be caused by other things. Even if the swelling is just in the joints, it's a good idea to get a formal diagnosis, ruling out other causes, and also to get treatment.  Is she on a non-steroidal anti-inflammatory yet? If not, she may want to give it a try. They can make a big difference with joint swelling/pain. They've kept me more active than I otherwise would have been for the last couple of decades.  I tried several meds before I found the one that worked best for me. I use Voltarin, but there are many NSAIDs available.  Ice is also really good. I use it after every activity, including taking a shower, to proactively prevent the swelling and pain from worsening. I would suggest this for your daughter, following any activity that would normally put her in bed the next day.  She may also want to get physical therapy to learn some safe exercises, if her personal situation allows. The stronger the muscles, the better able they are able to hold the joints firmly in place and keep bones away from each other. My orthopedist once said, while easily moving my wrist joint around for illustration purposes, " A person's joints could be completely healthy, but if the muscles are weak, the joints will hurt due to excessive joint movement. "  Strong muscles hold joints in place much better than weak muscles. Weakness allows movement that causes pain and leads to premature degeneration of the joint, which causes even more pain. If your daughter is able, safe exercises may help reduce pain and keep her active longer.  (CMT1a) From: Geri Logan <hotwheels@...> Subject: Swollen Joints? Date: Saturday, October 23, 2010, 12:19 PM  My daughter has been having a problem with swollen joints after she has bee very active. Has this happened to any of you? It puts her in bed for a day or two and in a lot of pain. Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 I suggest she see a good orthopedic surgeon. Our ankle joints tend to eventually fail from arthritis,and other joints often get arthritis from extra stress from the way we walk. Usually this is when we'reolder but everyone differs. A orthopedic surgeon may be able to suggest braces, orthodics, or physical therapy tht will be a big help. Also she may just be over doing things if she has suddenly become very active. She may need to cut bach AND INCREASE HER ACTIVITY GRADUALLY > > My daughter has been having a problem with swollen joints after she has bee very active. Has this happened to any of you? It puts her in bed for a day or two and in a lot of pain. > > Geri > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Thank you and I will pass this info on. Geri Re: Swollen Joints? I suggest she see a good orthopedic surgeon. Our ankle joints tend to eventually fail from arthritis,and other joints often get arthritis from extra stress from the way we walk. Usually this is when we'reolder but everyone differs. A orthopedic surgeon may be able to suggest braces, orthodics, or physical therapy tht will be a big help. Also she may just be over doing things if she has suddenly become very active. She may need to cut bach AND INCREASE HER ACTIVITY GRADUALLY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 To those of you that were kind enough to respond......on swollen joints, My daughter has cancer and some days is in alot of pain but the doc does not think, what we are seeing is from the cancer. Her swelling and pain seems to get unbearable when she has been too active. She has been tested for Rheumatoid Arthritis and does not have that but don't know about Osteoarthritis . Thank you Geri Hi Geri, Yes, this happens to me. I have degenerative joint disease in ankles, hips, and knees - due to CMT weakness. The swelling is most obvious in my knees. The swelling never goes away, just gets worse with activity. My hips swell around the front tendon area, diagnosed a few years ago as Iliopsoas tendonitis. With the ankles, the swelling is also primarly around the tendons - looks and feels like a mildly sprained ankle. Pain and swelling is much worse in hips and knees. Activity puts me in bed for days, especially if the activity isn't something the body is accustomed to doing. In your previous email, you also asked about numbness, which is why I didn't respond initially. I don't have CMT-related numbness in my legs. My CMT nerve symptoms include burning/irritation in limbs, not numbness. These nerve symptoms also get worse with activity. I have no swelling in my thighs/calves, just the joints. If your daughter's swelling (edema) is in the soft tissue rather than the joints, then I'd definitely have a doctor check it out to make sure there's not something else going on. I've heard some say that CMT can cause this, but it can also be caused by other things. Even if the swelling is just in the joints, it's a good idea to get a formal diagnosis, ruling out other causes, and also to get treatment. Is she on a non-steroidal anti-inflammatory yet? If not, she may want to give it a try. They can make a big difference with joint swelling/pain. They've kept me more active than I otherwise would have been for the last couple of decades. I tried several meds before I found the one that worked best for me. I use Voltarin, but there are many NSAIDs available. Ice is also really good. I use it after every activity, including taking a shower, to proactively prevent the swelling and pain from worsening. I would suggest this for your daughter, following any activity that would normally put her in bed the next day. She may also want to get physical therapy to learn some safe exercises, if her personal situation allows. The stronger the muscles, the better able they are able to hold the joints firmly in place and keep bones away from each other. My orthopedist once said, while easily moving my wrist joint around for illustration purposes, " A person's joints could be completely healthy, but if the muscles are weak, the joints will hurt due to excessive joint movement. " Strong muscles hold joints in place much better than weak muscles. Weakness allows movement that causes pain and leads to premature degeneration of the joint, which causes even more pain. If your daughter is able, safe exercises may help reduce pain and keep her active longer. (CMT1a) From: Geri Logan <hotwheels@...> Subject: Swollen Joints? Date: Saturday, October 23, 2010, 12:19 PM My daughter has been having a problem with swollen joints after she has bee very active. Has this happened to any of you? It puts her in bed for a day or two and in a lot of pain. Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2010 Report Share Posted October 25, 2010 Geri - This may sound nuts, but does your daughter have psoriasis in addition to CMT? has severe psoriasis and suffered from the same symptoms as your daughter periodically...turns out he also has psoriatic arthritis which is being controlled with medication intervention. > > My daughter has been having a problem with swollen joints after she has bee very active. Has this happened to any of you? It puts her in bed for a day or two and in a lot of pain. > > Geri > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2010 Report Share Posted October 25, 2010 Geri - I just read the post about the cancer...methotrexate is a drug commonly used during cancer therapy and it also helps tremendously with swollen joints and pain. Just another thought...I am praying for you both. > > From: Geri Logan <hotwheels@...> > Subject: Swollen Joints? > > Date: Saturday, October 23, 2010, 12:19 PM > > > > My daughter has been having a problem with swollen joints after she has bee very active. Has this happened to any of you? It puts her in bed for a day or two and in a lot of pain. > > Geri > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2010 Report Share Posted October 26, 2010 Thank you and I will pass your info on to her. Thanks for the prayers. Blessings Geri Swollen Joints? > > Date: Saturday, October 23, 2010, 12:19 PM > > > > My daughter has been having a problem with swollen joints after she has bee very active. Has this happened to any of you? It puts her in bed for a day or two and in a lot of pain. > > Geri > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2010 Report Share Posted October 26, 2010 Hi Geri,  I'm very sorry to hear about your daughter. I'm glad they tested her for RA. My docs did the same. They've tested me for RA, Lupus, etc., several times over the years, just to make sure there wasn't something else going on. It's good to rule out these other potential causes.  I agree with Lanman that an orthopedist may be a good place to start. If there is joint irritation and/or early deterioration due to weakness or gait, an orthopedist will be able to see that and can identify the specific cause, as well as the appropriate treatment.  Another possibility is that the swelling is from the nerves themselves. Gretchen has posted many articles about 'hypertrophic nerves' in CMT1A patients.  The nerves become so enlarged they can be felt or seen. I can see the nerve on the lower/inside of my elbow. It looks swollen there. After I type for awhile, it gets larger and painful. So, that's another possibility to consider. Perhaps a neurologist can evaluate for that issue.  But, the docs should be able to come to a diagnosis, based on the evidence, her health history, meds, etc. This is important because she can't get the appropriate care without the correct diagnosis. I would keeping advocating for an answer.     From: Geri Logan <hotwheels@...> Subject: Re: Re: Swollen Joints? Date: Monday, October 25, 2010, 9:21 PM  Thank you and I will pass your info on to her. Thanks for the prayers. Blessings Geri Swollen Joints? > > Date: Saturday, October 23, 2010, 12:19 PM > > > > My daughter has been having a problem with swollen joints after she has bee very active. Has this happened to any of you? It puts her in bed for a day or two and in a lot of pain. > > Geri > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2010 Report Share Posted October 27, 2010 Thank you so much I'll show this to her Geri Hi Geri, I'm very sorry to hear about your daughter. I'm glad they tested her for RA. My docs did the same. They've tested me for RA, Lupus, etc., several times over the years, just to make sure there wasn't something else going on. It's good to rule out these other potential causes. I agree with Lanman that an orthopedist may be a good place to start. If there is joint irritation and/or early deterioration due to weakness or gait, an orthopedist will be able to see that and can identify the specific cause, as well as the appropriate treatment. Another possibility is that the swelling is from the nerves themselves. Gretchen has posted many articles about 'hypertrophic nerves' in CMT1A patients. The nerves become so enlarged they can be felt or seen. I can see the nerve on the lower/inside of my elbow. It looks swollen there. After I type for awhile, it gets larger and painful. So, that's another possibility to consider. Perhaps a neurologist can evaluate for that issue. But, the docs should be able to come to a diagnosis, based on the evidence, her health history, meds, etc. This is important because she can't get the appropriate care without the correct diagnosis. I would keeping advocating for an answer. From: Geri Logan <hotwheels@...> Subject: Re: Re: Swollen Joints? Date: Monday, October 25, 2010, 9:21 PM Thank you and I will pass your info on to her. Thanks for the prayers. Blessings Geri Swollen Joints? > > Date: Saturday, October 23, 2010, 12:19 PM > > > > My daughter has been having a problem with swollen joints after she has bee very active. Has this happened to any of you? It puts her in bed for a day or two and in a lot of pain. > > Geri > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.