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Question for SVR's: Rib and neck pain with equilibrium problems.
Here's a question for all our SVR's out there (and those who have not treated, feel free to chime in as well):
I have noticed an increasing stiffness in my mid and upper back, along with frequent rib pain and stiffness over the past four years, since SVR. My neck also feels very tight and 'immobile' down deep in the spinal column. Often when I move my head quickly or twist my body when walking, I feel off balance. I also feel many more odd sensations along my back, and neck/ head when sitting or resting. I sometimes feel a sort of 'burning' or tingling numbness in the skin, and muscles along these areas. Its a strange, and uncomfortable feeling, especially the equilibrium issues.
When I sleep these days, I can not stay on either side for long, or my shoulder and neck begin to feel intense pressure and cramping, along with eventual numbness. I think that I have some sort of residual nerve damage, and/or connective tissue problems. I have done Cat Scans a couple of years ago, and nothing particularly of note, other than normal aging and spinal wear and tear.
I also sometimes think the rib and back issues (much like costochondritis) ebb and flow with my 'autoimmune' flareups, since ending tx.
Any similar cases? Any thoughts?
DoubleDose
I have noticed an increasing stiffness in my mid and upper back, along with frequent rib pain and stiffness over the past four years, since SVR. My neck also feels very tight and 'immobile' down deep in the spinal column. Often when I move my head quickly or twist my body when walking, I feel off balance. I also feel many more odd sensations along my back, and neck/ head when sitting or resting. I sometimes feel a sort of 'burning' or tingling numbness in the skin, and muscles along these areas. Its a strange, and uncomfortable feeling, especially the equilibrium issues.
When I sleep these days, I can not stay on either side for long, or my shoulder and neck begin to feel intense pressure and cramping, along with eventual numbness. I think that I have some sort of residual nerve damage, and/or connective tissue problems. I have done Cat Scans a couple of years ago, and nothing particularly of note, other than normal aging and spinal wear and tear.
I also sometimes think the rib and back issues (much like costochondritis) ebb and flow with my 'autoimmune' flareups, since ending tx.
Any similar cases? Any thoughts?
DoubleDose
Mine dropped down to 255 (250 bottom of normal range) a few months ago, and now is 320. My tests "free" was also low at that time, and now is in normal range. Before and during treatment, I think it was in the 400's, I'd have to check. My main concern with supplement treatments is that I was told once I start, I would have to continue for life because my body might stop producing testosterone. However, still keeping it in mind for the future, but hoping for some sort of rebound by itself. Haven't seen an endo yet, but maybe I should.
I have similar symptons to what you describe but the facial flushing finally showed dramatic improvement this summer (14 months post treatment). Have no plans to test it in a steam room or sauna yet, but I am now able to exercise vigorously without a lasting flush. I can also go out in the sun, although I'm not tempting fate by sunbathing and judiciously use sun block on my face. The flushing is rosacea related and it mostly came about because of treatment.
Be well,
-- Jim
I have similar symptons to what you describe but the facial flushing finally showed dramatic improvement this summer (14 months post treatment). Have no plans to test it in a steam room or sauna yet, but I am now able to exercise vigorously without a lasting flush. I can also go out in the sun, although I'm not tempting fate by sunbathing and judiciously use sun block on my face. The flushing is rosacea related and it mostly came about because of treatment.
Be well,
-- Jim
Never tested the testosterone before or during tx. Was first tested when I went to endo to check on weird post tx sides - facial flushing, nervousness, sleeplessness, no libido etc. That test came back around 200. Also had some problems with insulin resistance.
Treated for three months with 5mg of Androgel to get up to about 300 and I felt better overall, no more facial flushing, calmer, slept better, more energy and stamina but around that time my blood pressure shot up as well. There was some thought that testosterone caused this so I stopped at my GPs suggestion and started BP meds. Taking Norvasc and Altace so BP is now good oh yea and I lost 80 pounds and am now eating right. But those facial flushing libido lack of energy probs came back and tested the testosterone and it was back under 200. Started back on Androgel - two 5 mg packets per day about a week ago. This was suggested by endo doc. Testing BP every day. We shall see.
Treated for three months with 5mg of Androgel to get up to about 300 and I felt better overall, no more facial flushing, calmer, slept better, more energy and stamina but around that time my blood pressure shot up as well. There was some thought that testosterone caused this so I stopped at my GPs suggestion and started BP meds. Taking Norvasc and Altace so BP is now good oh yea and I lost 80 pounds and am now eating right. But those facial flushing libido lack of energy probs came back and tested the testosterone and it was back under 200. Started back on Androgel - two 5 mg packets per day about a week ago. This was suggested by endo doc. Testing BP every day. We shall see.
I do agree with your comments, and I do still ascribe most of the post-tx issues to the interferon...though I think the persistent virus may be exacerbating the problems, possibly by also continuing to provoke interferon production as well.
My off-balance issues are more mechanical, rather than 'dizziness' or light-headedness, per se. I can feel a binding, and grabbing in the spinal cord when I move my head, frequently, and when I turn my head while walking it feels like my equilibrium is being disrupted...kind of like a nerve is being pressed, or pinched. I also get a painful burning, and tingling feeling often, along my arms, and into the last two fingers. These are classic symptoms of Thoracic Outlet Syndrome....but I believe it was brought on by all the interferon.
DD
My off-balance issues are more mechanical, rather than 'dizziness' or light-headedness, per se. I can feel a binding, and grabbing in the spinal cord when I move my head, frequently, and when I turn my head while walking it feels like my equilibrium is being disrupted...kind of like a nerve is being pressed, or pinched. I also get a painful burning, and tingling feeling often, along my arms, and into the last two fingers. These are classic symptoms of Thoracic Outlet Syndrome....but I believe it was brought on by all the interferon.
DD
Re the "off balance" thing. Not sure if it's the same, but I have noticed a very slight "off balance" or dizziness at time, esp when getting out of bed or out of a chair, etc. That's a classical reaction to low blood pressure and can be checked by taking your blood pressure while lying down and them immed while standing up when you get these episodes. If the systolic (top number) drops like 20 points, then that's the problem. BTW this is pretty normal for lots of folks who don't have HCV and therefore never treated. Still, I don't remember it so much before treatment, but again, I think the interferon has hastened the aging process and with that hastening has come some blood pressure issues. It's like parts of us have aged ten years from the interferon. And still, it's "treat, treat, treat" for some people as if there are no consequences. DD, I think where we differ is that I really think most of the post treatment problems people experience are not from an occult virus, but from this long-term exposure to interferon. That doesn't mean I'm dismissing the occult/persistent virus outright, just think the interferon is what is causing so many of our problems post treatment. Especially those problems many of us never had before we took the interferon.
-- Jim
-- Jim
RTS,
Sorry you're still having problems. Not exactly the same, but I developed some back problems after treatment, but blame it most on a year of almost complete inactivity. That plus I think interferon ages us in many ways, probably hastening such age-related things such as arthritis, cognitive issues (memory, etc), and perhaps even prematurely lowered testosterone. We already know that interferon hastens menopause but fortunately that's one issue I don't have to deal with :)
Curious about the testosterone thing. Do you remember what your level was before treatment and during treatment? How low did it go at the time you decided to supplement it? What did you take, how did it make you feel, and why did you stop?
Before and during treatment my testosterone was right in the middle of normal, pretty good for someone my age. After treatment it dropped to low normal, then slightly below normal and now it's again low normal. I asked my liver doc if he thought it was interferon related, and he said that he wouldn't be surprised.
Thing is he inferred that once you start testosterone replacement therapy, you have to continue with it for life since your body adjusts and stops making its own as before? For that reason I'm reluctant to try it. Did you see a specialist re testosterone replacement and did they say it was OK to go on and off it?
All the best,
-- Jim
Sorry you're still having problems. Not exactly the same, but I developed some back problems after treatment, but blame it most on a year of almost complete inactivity. That plus I think interferon ages us in many ways, probably hastening such age-related things such as arthritis, cognitive issues (memory, etc), and perhaps even prematurely lowered testosterone. We already know that interferon hastens menopause but fortunately that's one issue I don't have to deal with :)
Curious about the testosterone thing. Do you remember what your level was before treatment and during treatment? How low did it go at the time you decided to supplement it? What did you take, how did it make you feel, and why did you stop?
Before and during treatment my testosterone was right in the middle of normal, pretty good for someone my age. After treatment it dropped to low normal, then slightly below normal and now it's again low normal. I asked my liver doc if he thought it was interferon related, and he said that he wouldn't be surprised.
Thing is he inferred that once you start testosterone replacement therapy, you have to continue with it for life since your body adjusts and stops making its own as before? For that reason I'm reluctant to try it. Did you see a specialist re testosterone replacement and did they say it was OK to go on and off it?
All the best,
-- Jim
I'll just take the 'stiff like a tree'..........and forget the blue pill!
My real gut feel on this neck/back stiffness, and especially the rib/ costochondritis, and dizziness, is that it is some sort of autoimmune flare-up, like a variation of Lupus. I really think I get the red patches on my cheekbones and bridge of nose when this stuff is flaring the worst. Its almost like an electrcal current turns on and off in my neck and upper back, causing muscle contractions at a vertebral level, and causing additional burning and sort of numbness in the affected areas. Trying to get comfortable sleeping is a real bear!
I am getting ready to go back to the Rheumatologist who originally described the post-tx autoimmune syndrome to me when I saw him about three years ago, almost a year after I finished tx, and became SVR. He did not offer any particular treatment then, but he may know more now, and may have seen more similar cases. Hey, I want to know where this thing goes....what is the prognosis....what the heck can we take to break the cycle????? Maybe Lupus meds? or some cortico-steroid cocktail...until the sx die down???? Or maybe that would just cause us to need the meds full time....AND I worry about any immune system modulator, especially systemic ones....as far as the remote chance of provoking the low-level, persistent virus into a recurrance, or allowing it to overcome the new immune system barriers.
I read one post recently where the doc said that now they think some of us may need 6 or 7 years after SVR to return to normal???? I wonder where they got that number...and whether we will return to normal at all...ever!
Oh well, life goes on.........where's the tea tree oil? I want to toss my ED meds!!!
DoubleDose
My real gut feel on this neck/back stiffness, and especially the rib/ costochondritis, and dizziness, is that it is some sort of autoimmune flare-up, like a variation of Lupus. I really think I get the red patches on my cheekbones and bridge of nose when this stuff is flaring the worst. Its almost like an electrcal current turns on and off in my neck and upper back, causing muscle contractions at a vertebral level, and causing additional burning and sort of numbness in the affected areas. Trying to get comfortable sleeping is a real bear!
I am getting ready to go back to the Rheumatologist who originally described the post-tx autoimmune syndrome to me when I saw him about three years ago, almost a year after I finished tx, and became SVR. He did not offer any particular treatment then, but he may know more now, and may have seen more similar cases. Hey, I want to know where this thing goes....what is the prognosis....what the heck can we take to break the cycle????? Maybe Lupus meds? or some cortico-steroid cocktail...until the sx die down???? Or maybe that would just cause us to need the meds full time....AND I worry about any immune system modulator, especially systemic ones....as far as the remote chance of provoking the low-level, persistent virus into a recurrance, or allowing it to overcome the new immune system barriers.
I read one post recently where the doc said that now they think some of us may need 6 or 7 years after SVR to return to normal???? I wonder where they got that number...and whether we will return to normal at all...ever!
Oh well, life goes on.........where's the tea tree oil? I want to toss my ED meds!!!
DoubleDose
See you are still tracking this thing down. I have the EXACT same problems although I am only a year or so removed from treatment. Definitely upper back/neck issues, stiffness, soreness, etc. I also have the off-balance thing as well. Kind of not locked in all the time. This is definitely a left-over tx issue as I had these things full time towards end of tx. They are better now but not resolved by any means. Thought it was a blood pressure issue but that is now resolved and I still have this problem - among others. Just started back on the tesosterone again, that keeps bottoming out on me. When it does it causes distress and lack of motivation I think - at least in one particular area anyway.
At any rate, please figure out why we feel this way and let me know how to fix it - I keep thinking it will be something simple - like something we started on tx to reduce sides that is now causing them - like tea tree oil! Yea, still using that but what if it makes you dizzy and sore and stiff like a tree! lol
At any rate, please figure out why we feel this way and let me know how to fix it - I keep thinking it will be something simple - like something we started on tx to reduce sides that is now causing them - like tea tree oil! Yea, still using that but what if it makes you dizzy and sore and stiff like a tree! lol
I also think my symptoms could be similar to Thoracic Outlet Syndrome, in which fibrotic muscle tissue crowds the thoracic outlet area thus causing the nerves leading down the arms, and into the head to become pinched or compressed. This also happens frequently to the veins and arteries in that neck/shoulder junction area as well. I wonder if the HCV and the tx drugs have caused a tremendous amount of atypical fibrotic tissue in these areas, or maybe connective tissue dysfunction, thus causing TOS.
DD
DD
I'll have to think on this one... I'd like to chime in and say everything is almost exactly the same... while it is --- I don't think mine are to the extent you describe it...
And I'm at a phase right now that I really can't determine if my aches are feeling better --- or if I'm just getting used to them - LOL!
Meki
And I'm at a phase right now that I really can't determine if my aches are feeling better --- or if I'm just getting used to them - LOL!
Meki
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