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HCV tendon, muscle, joint problems
Hello, I was cured of HCV 18 months ago, I am very happy for that. For several weeks I have been trying to see if there is a connection between the HCV virus and tendon, muscle, joint problems. A year before I was diagnosed with HCV I had a tendon snap in my toe. all I was doing was walking. I have also had problems with tendons in the elbow pre-txt. I have had severe back problems with the sacroiliac joint.
After finishing tx I developed plantar fascias which I realize is also a tendon. It took 6 months to heal.
For the past 6 months I have slowly been experiencing, bicep, tricep and shoulder pain which also could be tendon, ligaments, muscles, not sure. I am going to a specialist on Monday to hopefully get an MRI to see what is happening in my shoulder. It is suspected that I have torn the labrum which is inside the rotator cuff as well as some of the tendons in the rotator cuff.
Today I stood up to do an exercise to help the shoulder pain and my low back popped out of place and now I can barely walk.
I am trying to see if others have had problems with this. I remember reading others stories years ago about similar problems. While I understand that age has a lot to do with these things. I am interested in finding out what I can do to help myself. Due to my low platelets from cirrhosis I do not want to try surgery until I have exhausted everything else. i.e. does HCV cause a problem, or cirrhosis? Does tx aggravate these problems. Are there vitamins or supplements that we might be deficient in that might help? Does cirrhosis play a part?
I am sorry to sound so low, I am lost and trying to find my way. Just trying to find a way to help myself. I had hoped that once I recovered from the tx I would have a chance to start over, get in shape, live my life free of the virus that plagued me for 30 years.
I would appreciate any responses, studies, information.
Thank you
Dee
After finishing tx I developed plantar fascias which I realize is also a tendon. It took 6 months to heal.
For the past 6 months I have slowly been experiencing, bicep, tricep and shoulder pain which also could be tendon, ligaments, muscles, not sure. I am going to a specialist on Monday to hopefully get an MRI to see what is happening in my shoulder. It is suspected that I have torn the labrum which is inside the rotator cuff as well as some of the tendons in the rotator cuff.
Today I stood up to do an exercise to help the shoulder pain and my low back popped out of place and now I can barely walk.
I am trying to see if others have had problems with this. I remember reading others stories years ago about similar problems. While I understand that age has a lot to do with these things. I am interested in finding out what I can do to help myself. Due to my low platelets from cirrhosis I do not want to try surgery until I have exhausted everything else. i.e. does HCV cause a problem, or cirrhosis? Does tx aggravate these problems. Are there vitamins or supplements that we might be deficient in that might help? Does cirrhosis play a part?
I am sorry to sound so low, I am lost and trying to find my way. Just trying to find a way to help myself. I had hoped that once I recovered from the tx I would have a chance to start over, get in shape, live my life free of the virus that plagued me for 30 years.
I would appreciate any responses, studies, information.
Thank you
Dee
I am sorry that you are having these problems. I am hoping that you will find the cause and also find a treatment that works or something that works to try to alleviate the problems.
While I agree that age can definitely contribute to various muscle, tendon, ligament, and joint problems, you seem to be having these problems all over the body, not just in one or two places. That would make me wonder if there is something systemic that is making you prone to these problems or that is causing these problems.
I know you had cryoglobinemia. Did the doctors also individually test you for all autoimmune disorders? I don't mean just an ANA test or a FANA test. Did they actually run specific tests for all of the specific autoimmune disorders? You could be negative on the FANA test (which tests for only a limited number of autoimmune disorders) and yet still be positive on the individual tests for testing for specific autoimmune disorders.
If it was me, I would go to a Rheumatologist, tell them all of your symptoms, tell them your history (cryo, Hep C, and everything else), and ask specifically to test you for all autoimmune disorders (run the individual tests for each autoimmune disorder). Tell them you want to know if Hep C has caused you to have any autoimmune disorders.
If you have a good Rheumatologist, he/she will do this. How do I know? I did just that. Since finishing Tx a year ago I have felt much better than I have felt for 20 years and I now have zero fatigue. I have a lot of energy and stamina and basically am doing very well. However, I do have a few symptoms that I had prior to treatment that never went away with treatment. I went to a Rheumatologist who is affiliated with the university medical center and gave her my history and told her I would like to know if Hep C has left me with any autoimmune disorders. So she ordered a truckload of tests, about 39 of them. Most were negative but two came back positive for an autoimmune disorder. I have had it for years, since long before treatment. I have had the symptoms for years but none of my other doctors ever picked it up or tested me for it. Had the Rheumatologist not tested me for the specific autoimmune diseases, one by one, she would not have picked it up. So it is important that one gets tested for each disease individually.
In addition to the autoimmune disease, I also had Vitamin D deficiency. So I am now on treatment for both the Vitamin D deficiency and the autoimmune disease.
So my suggestion would be to see a Rheumatologist in addition to who ever else you are seeing. If possible, I would see one who is affiliated with a university medical center.
Best of luck. I hope you can get to the bottom of the problem.
While I agree that age can definitely contribute to various muscle, tendon, ligament, and joint problems, you seem to be having these problems all over the body, not just in one or two places. That would make me wonder if there is something systemic that is making you prone to these problems or that is causing these problems.
I know you had cryoglobinemia. Did the doctors also individually test you for all autoimmune disorders? I don't mean just an ANA test or a FANA test. Did they actually run specific tests for all of the specific autoimmune disorders? You could be negative on the FANA test (which tests for only a limited number of autoimmune disorders) and yet still be positive on the individual tests for testing for specific autoimmune disorders.
If it was me, I would go to a Rheumatologist, tell them all of your symptoms, tell them your history (cryo, Hep C, and everything else), and ask specifically to test you for all autoimmune disorders (run the individual tests for each autoimmune disorder). Tell them you want to know if Hep C has caused you to have any autoimmune disorders.
If you have a good Rheumatologist, he/she will do this. How do I know? I did just that. Since finishing Tx a year ago I have felt much better than I have felt for 20 years and I now have zero fatigue. I have a lot of energy and stamina and basically am doing very well. However, I do have a few symptoms that I had prior to treatment that never went away with treatment. I went to a Rheumatologist who is affiliated with the university medical center and gave her my history and told her I would like to know if Hep C has left me with any autoimmune disorders. So she ordered a truckload of tests, about 39 of them. Most were negative but two came back positive for an autoimmune disorder. I have had it for years, since long before treatment. I have had the symptoms for years but none of my other doctors ever picked it up or tested me for it. Had the Rheumatologist not tested me for the specific autoimmune diseases, one by one, she would not have picked it up. So it is important that one gets tested for each disease individually.
In addition to the autoimmune disease, I also had Vitamin D deficiency. So I am now on treatment for both the Vitamin D deficiency and the autoimmune disease.
So my suggestion would be to see a Rheumatologist in addition to who ever else you are seeing. If possible, I would see one who is affiliated with a university medical center.
Best of luck. I hope you can get to the bottom of the problem.
Thank you so much for your answer, I really appreciate you taking the time to explain everything. I was wondering about the auto immune.
Before I treated this second time I did test positive for RA but was told it was the HCV. I assumed that the cyro was gone along with the HCV. All the spots are gone or going away which is pretty much a miracle to me. I had been told that they were iron stains left from the blood and were like tattoos.
I have an appt today to hopefully get a referal for MRI. I hope I can get tests done before I lose the use of my arm. I am using a sling right now and it seems to help. I also had the vitamin D deficiency like you. I am now ok with that, just looking for other possible links, thanks so much for telling me about the auto immune problems.
Thanks again, Dee
Before I treated this second time I did test positive for RA but was told it was the HCV. I assumed that the cyro was gone along with the HCV. All the spots are gone or going away which is pretty much a miracle to me. I had been told that they were iron stains left from the blood and were like tattoos.
I have an appt today to hopefully get a referal for MRI. I hope I can get tests done before I lose the use of my arm. I am using a sling right now and it seems to help. I also had the vitamin D deficiency like you. I am now ok with that, just looking for other possible links, thanks so much for telling me about the auto immune problems.
Thanks again, Dee
Dee, I am so sorry you are experiencing these joint problems.
I too have experienced joint pain but sometime after SVR it did improve somewhat.
However as I swim and do yoga, I find that I need to be very careful because it seems like I am "pulling" something every time I turn around.I spend a lot of time applying heat to sore areas.
Everyone has posted good ideas of what may be causing this and I really cannot add to it but I do want to offer you my sincere concern for what you are going through and my best wishes for your recovery from it.
Riv
I too have experienced joint pain but sometime after SVR it did improve somewhat.
However as I swim and do yoga, I find that I need to be very careful because it seems like I am "pulling" something every time I turn around.I spend a lot of time applying heat to sore areas.
Everyone has posted good ideas of what may be causing this and I really cannot add to it but I do want to offer you my sincere concern for what you are going through and my best wishes for your recovery from it.
Riv
Thank you so very much for your response. I appreciate you taking the time to help me find out more information. I have read many posts from the past so hoped it would be ok to ask here again.
Today I went to the orthopedic doctor he said I have adhesive capsulitis (frozen shoulder) he said the fall could have done it or it could have been coming on any way. Diabetics are 3 times as likely to get this and women are also more likely. I have never felt a pain like this, it feels as if my shoulder is ripping every time I move it. The doctor told me that more pain is in store for me. During physical therapy the objective is to get rid of the scar tissue which has some how formed. I know I did not start this way, it was a pain here and there which I tried to treat for close to 5 months until the pain was with me constantly and I put a sling on. That was the worst thing I could have done.
He actually gave me pain meds to take before and after each session of PT
Again Willy, I thank you so much.
Dee
Today I went to the orthopedic doctor he said I have adhesive capsulitis (frozen shoulder) he said the fall could have done it or it could have been coming on any way. Diabetics are 3 times as likely to get this and women are also more likely. I have never felt a pain like this, it feels as if my shoulder is ripping every time I move it. The doctor told me that more pain is in store for me. During physical therapy the objective is to get rid of the scar tissue which has some how formed. I know I did not start this way, it was a pain here and there which I tried to treat for close to 5 months until the pain was with me constantly and I put a sling on. That was the worst thing I could have done.
He actually gave me pain meds to take before and after each session of PT
Again Willy, I thank you so much.
Dee
Thank you so very much for your reply. This pain is unbearable. I tried to treat it with heat ice, even a personal ultrasound, the pain just kept getting worse until I felt like a knife was stabbing me or my shoulder was ripping. It is confusing to me how it all happened since the doctor said it can just come on and as it does it creates scar tissue. He is giving me 8 weeks of PT, if it does not work, he will put me to sleep and manually break it up eek!
You can bet I am going to be working very hard on healing this myself :)
He also said the average person waits about 3 months before coming in so at 5 months I wasn't too bad as far as seeking help.
My best to you, Dee
You can bet I am going to be working very hard on healing this myself :)
He also said the average person waits about 3 months before coming in so at 5 months I wasn't too bad as far as seeking help.
My best to you, Dee
I found a little info, it seems that it starts with pain, you don't move your arm then scar tissue builds up.. more pain, less movement, it is a vicious circle.
Here is something I found about this
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001490/#adam_000455.disease.causes
Again, thanks for all responses, Willy's references are very interesting I am looking into all that he posted. Dee
Here is something I found about this
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001490/#adam_000455.disease.causes
Again, thanks for all responses, Willy's references are very interesting I am looking into all that he posted. Dee
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I have long been a supporter of threads which deal with this topic.
I suggest you read those threads carefully within the medhelp HCV forums.
Your symptoms sound as though they share commonalities with other with post TX issues.
I know too many people....people whom I have personally met or people whom I have known on forums for years who have developed such symptoms. They are people who were more or less "well" before TX and who developed issues after treating.
I merely note..... that there have been many, many threads in every HCV forum I have been in. I've been online in HCV forums for more than 10 years.
There are at least 2 forums which also have Post TX Sides forums within the Hep C forum.
I think that speaks for itself.
I suggest you visit
HCV wanderers (post TX sides)
http://hcvsociety.org/forum/viewforum.php?f=6
(you'll note that they have a post TX side effects forum)
I also suggest you visit HCVsupport
They also have a post TX side effect forum
and I have also used their search engine and find that many of these uncommon side effects that doctors don't seem to be aware of are well known in the treatment experienced forums.
http://hcvsupport.org/forum/index.php/board,36.0.html
Post Treatment Syndrome - SUPPORT GROUP
"For those who are experiencing post treatment side effects beyond the normal potential of 6-12 months and/or have developed known complications related to treatment medications, HCV Support has created an area for support that is not in the public view.
Enter here to learn more about this area, its membership criteria, and how to request access should you meet these criteria."
========================
If these links do not appear anyone can write me, or I think with the key words provided you can find your way
I am sorry for your issues and hope that these may aid you or at least help establish/provide support for causation.
best,
Willy