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Avatar universal

How many have chronic neck pain?

Just a question for all those out there, both the non-treaters who currently have HCV, and those who have treated, either successfully and have SVR'ed, or who have relapsed.  How many of you have been bothered by periodic stiff neck, pains in the neck and shoulders, and related pains or numbness in the neck, shoulder, and arms.  I have really noticed an increase in this problem since becoming SVR, and think that it may be connected to both the former HCV infection, which often provokes joint problems, and also to all the interferon that I did over the years.  For me, the neck issues are the most disconcerting of any of my post-tx problems, and really detract from my quality of life.  

So I would appreciate hearing from forum members as to whether you have NOT had any of these problems, or if you have, how would you describe them.  How frequent, how severe, and how widespread in physical location.  Also, please mention if you have or have not treated in the past, and if you are now SVR.  I am curious as to whether the SVR's have more joint problems, or the same as everyone else.

Thanks for any comments.  

DoubleDose
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317787 tn?1473358451
I know this is an old post however want to say that since finishing tx I have been having neck and head pain.  Could it be muscles being used that have not been used in a while, for me I mean.  I sure hope this muscle tension will go away,  I just finished tx 2 weeks ago and am feeling a little better
Dee
Helpful - 0
131817 tn?1209529311
I can see you floating across the floor like a walrus!  LOL Sorry, couldn't help myself!  I have done the same thing myself tooo many times. I have so many injuries, now I am wondering if we as Hep C persons, just damn clumsy!  Nah, not really, cuz my pain isn't in the same places as those injuries!  That's the thing that makes me wonder about all of this!  I am interested in those that have had pain clear up after tx. I am interested in those that have pain as I do now, that didn't have it before.  Of course, as I said before,this is anecdotal....not a study, but it is hard not to look at patterns on this forum. There are so many of us.

How many have fibromyalgia after treating?  Drugs do cause this, although they say this is not a disease (NY Times). I beg to differ. I would love someone who doesn't feel what I do to step into my shoes for a day or two. It is real! I didn't believe it for over a year!

We sure don't know when it began, but I can say with certainty that is started during tx and continued with a vengence afterwards. i hope like hell, it goes away!  Not counting on it, but I sure hope it does, as other sx of post tx go away.  I know that FM can begin from drugs like chemo, or an accident!  Luckily I have found Lyricia to treat my pain and am okay. I hope all of those that have posted with problems also find some way to feel better after tx. Tx does exaserbate injuries and mental injuries as well. So let's all work on getting the help we need off tx.

Linda
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Avatar universal
Your question was the exact purpose of this thread!  By looking at all the Forum members' experiences, we might gain a better understanding of how common these problems are for those with HCV, or those who have treated.  I tend to see a much higher percentage of positive replies, than you would expect from the general (HCV-) population.

Nothing real scientific here, but meaningful just the same.  Most people that I have met over the years, who have had long term HCV infection, all seem to have a bunch of prior problems with joints...either neck, back or shoulders...or a combination of the above.  I would like to hear how many reading this thread have had these problems, and how many have not!  

My joint problems began in earnest, decades ago when my LFT's began to be elevated.  I think it correlates exactly to when HCV became a chronic active infection for me.  How does everyone else see this issue?

DoubleDose
Helpful - 0
146021 tn?1237204887
Well, just can't stop talking about myself, (it's all about me)
I  have numbness in the right hand, and in my shoulder from this stuff too.
Any convincing data to support the hep c theory?
Bug
Helpful - 0
146021 tn?1237204887
Well, this is certainly a lengthy thread and caught my eye because of my neck pain.
It really is hard to believe that it could be hep-c related, I feel like my pain is a combination of age, work history, genetics and enviromental factors. I've been rear-ended 4 times and finally got some x-rays done a few years ago. The dr said my neck was much older than my back.

Fast forward to a few months ago when I slipped on a wet floor and slid like a walrus on my stomach till I lost momentum.

My neck and right shoulder began bothering to the point that I couldn't sleep at night.

My PCP said "Arthritis in the neck, probably rotator cuff tear."

My ortho said "Probably herniated disc in the neck, arthritis in the shoulder"

MRI showed 2 herniated discs at C5-6 and C6-7 and a full thickness tear in the supraspinatus, next to a spur on the clavicle (collarbone)

Hep C related or bad luck and genetics?
H-m-m-m-m-m......I think it's occupational to begin with, age aggravated and impacted by general clumsiness, klutzyness (sp)
But I could be wrong!
Hugs,
Bug
Helpful - 0
264233 tn?1216342315
b4 tx most of what i was feeling was joint pain and some neck pains that i always thought were related to a slight bulging disc at 5&6 spinal, but now that you bring this up i am wondering if my pains could of been getting more noticeable b4 i finally started tx,,  since tx the only pains i have are generally in the joints of my fingers and some times in my hip and knees.  i am 3 mths post tx, geno 1-a stage 3 cirrosis and not sure what stage fibrosis.
Helpful - 0
131817 tn?1209529311
You are welcome! Glad you finally piped in. I always wonder how many lurkers we have here. As you have most likely read, the younger you are when you tx, the better. I had a hard time on tx and relapsed. As a 1a, stage 1, I just don't want to do it again soon. I am 56 though. Once you find out what stage you are, it will be easier to decide if you want to tx or not. I had the aches and pains. The fatigue was awful before. Have you thought about a fibroscan, instead of a bx?
Helpful - 0
427265 tn?1444076436
Thanks for the warm welcome guys! Yes, I have been lurking for a time. I was an active message board-er for a couple years after DX, feeding my info frenzy to learn as much as I could about HCV. I am a Genotype 1a, non-treater presently. Have not had a bx yet.

I felt I was doing good, great even...healthwise with diet and lifestyle changes. Went through a tumultuous year with a divorce and selling the home, and I believe that the long term stress level has me challenged now. I would like to blame the stress, getting older...or even the cold Minnesota weather for the increase in aches and fatigue, but deep down I know it ain't so.....My next appointment is March 5th, so will post the results of whatever tests we run later.
Helpful - 0
131817 tn?1209529311
Okay, DD, I will take the plunge!  I know sometimes you have taken a few surveys on stuff. It would be interesting to know, especially about those of us that have tx'ed, at least for me!  

You are okay with me bud!

Linda
Helpful - 0
131817 tn?1209529311
Just sent you a PM as a welcome to our forum as well!  I sure hope you keep posting and let us know who you are, how your stats are etc. If you have been lurking, you know we only bite once in awhile!  
Helpful - 0
Avatar universal
Linda,  I think your survey idea is a good one.  I also think the tx medications really created tremendous problems for me as well.  Things that didn't interfere very much in the past have become horrible and chronic afflictions.  The neck and shoulder (and arms too) thing is a major problem, and came on like gangbusters right after I ended tx over four years ago.  I also have several other chronic issues that started at the end of tx, mostly autoimmune in pattern, but I won't go over that ground again right now.  I would love to see a survey thread looking at pre-tx, tx, and post-tx pain and dysfunction patterns.  I encourage you to throw out a thread to that effect.  I am going light on putting out survey threads for awhile, since it seems I am always surveying this or that.  I don't want to wear out my welcome!

Justme53,
Welcome to the forum and thanks for your first post.  I remember the first time that I took the plunge, after being a silent forum reader for a year or two. After some initial nervousness, almost like speaking before an audience,, it felt good to begin connecting to others, and having an outlet to ask questions and discuss relevant concerns.  I assume you have not yet tx'ed, since you indicate that the problems may be 'hep related', and you may well be right.  I think many with active HCV develop strange joint and nerve related problems, even though many are also completely free of these particular symptoms.  Those who do the tx also seem to either worsen any existing problems (in many cases, but not always), or to often develop these pain related issues after having no real prior history.  We look forward to hearing more from you, and wish you the best.  If you have questions or want support in dealing with the HCV, or potential treatment, just ask anyone (or everyone) on the forum.  You will get plenty of solid information and personal experiences.

DoubleDose
Helpful - 0
427265 tn?1444076436
My first post here...and one that I've been pondering over lately. I've never experienced much joint pain, but in the past few months, that has changed...most remarkedly in my shoulders and arms. (rotator cuff?) A couple of months ago I started a new program to exercise my arms, the weakest part of my body, it seems. Using hand weights, but nothing too extreme. But I'm not seeing any improvements here..thinking I'm exacerbating an underlying problem. Wondering if it's age-related or hep-related. Think I'll stick with yoga.
Helpful - 0
131817 tn?1209529311
Hmmmm. Interesting. I sure have lots of neck and shoulder pain! Thank goodness for labtops and beds!  I do most of my work laying down. Standing too long really gets me hurting. Perhaps this is a problem of soft connective tissues, or not enough exercise. Most likely there are those that do lot's of exercise and have this problem. I hurt too much to do much exercise. I need aqua therapy. i think that will help! I have fibromyalgia that I NEVER had pre tx. Now I do. So perhaps it was the drugs, I think it was, or it is the Hep C.  Ugggh. All I know is I hate it, hate it, hate it!  You know DD there won't be a study for maybe 20 years on this stuff. Wish there was, but we are the pioneers of the Hep C drugs and dx. Unfortunately.  

It is interesting to see how many people on tx have these muscle and joint pains. I never noticed it before I had the fibro. Sure makes me think it is the drugs. Actually, there was something I read that showed that fibromyalgia can be caused from drugs. I had a bad back, fell off a billboard...had shoulder surgury years ago. It never bothered me until I was on/after tx. I think the tx drugs have more to do with this. I could be wrong, but perhaps we take a survey as to how many people had this pre tx, during and after?  Linda
Helpful - 0
Avatar universal
Another thought on the neck and shoulder pain might be that HCV could have a propensity for the soft, connective tissues in that region, and thus provoke the highest level of immune system responses there.  This could be true for the HCV positive person, and also the SVR's, since persistent virus might remain in these connective tissues, causing a targeted immune response that constantly waxes and wanes.  Maybe the virus, and the immune system reaction goes through periodic flare-ups.  Just a thought.

DoubleDose
Helpful - 0
131817 tn?1209529311
Yes, my mantra now is, 'get on with life'.  I have my bad days...did yesterday. But I am going forward. I refuse to allow this dis ease to get to me!  My HMO wants me to go on SSI. That just isn't me. I want to live normalliy, if possible. I won't give up and will continue until I can't. I don't see this happening and want to be happy and live the best I can. At the moment, sometimes, I am in a lot of pain. I work on NOT being this way. I want to be well and work at this...that is how I see myself. I refuse to allow myself to be some invalid person who can't function in life...Sometimes, this isnt' easy, but I will until I can't!!  I won't give up!

Linda
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Avatar universal
Hi yall, havent looked in on things for a while.  I am 20 months post tx and SVR.  As usual, DD brings up a good topic.  I developed really severe upper back neck and shoulder pain about 30 weeks into treatment.  

It continued, and actually got worse, after completing tx and for a LONG LONG time after completion.  It has only been in the last few weeks that I am getting some relief.  In my case, working-out and weight training has seemed to help, along with a good stretching program.  I  know that the combo drugs caused this cause I never had that kind of problem before I treated.  I had a bad back, but that got better after tx as well.  

I continue with what feels like some nerve and muscle pains in my arms and burning sensation in my ankles and shoulders but all in all I have continued to get better SLOOOWLY over time.  I feel fantastic these days.  Depression has lifted, I am rejoining the human race.  My tx splattered brain has even come around.  I am happy and blessed and sooo glad I treated and got this bad boy off my back.  Good to see everyone hanging in there.  Len.
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Avatar universal
Hi Linda!  I like that mantra, “get on with life”! & have to remind myself I was filling my waking hours with something else 2 years ago, now what was it again?...oh yeah, that was life, aka “normal”. Lol. I’m still curious to a fault (aside from finding out what’s up so I can hopefully treat it properly) about what the contributing factors might be, but it sure can become a big loop of reading & speculation. Sounds like you’ve been through a lot more than I have, but found a good balance & have a very positive nature. Good for you for turning your energies to a new career – I think when you want a change like that enough, you’re more than halfway there already. Hope you have fun with it!........Janann
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232778 tn?1217447111
I don't have neck pain. But my wife,who has never had Hep C or any other illness, dose. It came on very sudenly for her (a small hernia it turns out, which is very difficult to treat, as operations in the neck are a bit risky due to all the veins). Get an MRI if you can and find out what it is.
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131817 tn?1209529311
You are so right!  Who knows what causes what?  I have and had so many syndromes and symptoms I had no idea when or where they came from. My purpose now is to just feel well and get on with life.  Wasting so much time worrying about where it came from can be counterproductive.  Get on with life, figure out how to correct the issues with your health.  So many times in my life I have had injuries and symptoms. If I spent all my time worrying about them, I wouldn't live.  Someone in my ins. co wants me to file for SSI. I am not going to. I want to start a new career and get on with my life, not feel sick and succomb to my afflictions. Hope I can!!  

Linda
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Avatar universal
Hi Jim! Thanks for the encouragement. So many things it seems are a tough dx, a long process of ruling out rather than testing positive. I hope your brother finds some relief soon! Even aside from a firm dx, I share the curiosity about what provokes a given syndrome/set of symptoms. Sometimes we never find out, but time just does its good work. Stay well!...Janann

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Avatar universal
Ahhh, thank you DD, that’s some real interesting reading there & sure does ring a few bells! I was thinking some sort of impingement but was fixated on the C vertebrae as the site. I’ve been between doctors throughout much of post-tx; rheumy out of commission for 6 months, GP left practise. The new GP’s guess of osteoarthritis was borne out by the Xray results, but I will go back & bring up the question of TOS. If he is reluctant to pursue testing (the neural sx not being bad, & no apparent weakness) I lean toward pressing for a sportsmed doc referral. It is great to have this specific possibility to ask about.

As with you, this may have been in the works for me pre-tx. I did have a longstanding right shoulder issue…but the neck issues certainly emerged post-tx. So – while this may have been coming on anyway, I can find no explanation for the appearing/disappearing muscular tightness & aches that started 1 month post-tx. (don’t think I specified, most of the random pain seemed more muscle- than joint-related). Just glad most of that appears to have settled down. It sure is daunting trying to sort out the possible effects of hcv & tx in individuals esp. when so many are ~ 50 years of age. Thanks for posing questions like this to get the info out there! If we all bug our doctors with the right questions, maybe it’ll get on the agenda at some conferences, & funding for studies will follow. Again, thanks much for that heads-up! & I wish you the best with yours…Janann
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394687 tn?1290920840
Yep I have very bad neck and shoulder pain - but also have Severe RA. I had my C1 and C2 fused a few years ago and my C4 and C5 are starting to go as well as my occipital lobe. But it seems I have had this virus for many years (36). I was dx with RA 14 yrs ago - so it could be the chicken or the egg theory - which came first?
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131817 tn?1209529311
Hope your tx gets better than having pain!  How is your CBC?  I hope you have had one by now.  I am off tx now and had a knife in my shoulder blades today...of course I forgot the Lyrica that I have been taking last night.  It helps alot.

Welcome to our forum!  I haven't seen you before, perhaps I missed your posts, but would like to hear more about your tx.

Wishing the best!
Linda
Helpful - 0
Avatar universal
Yes, I have severe neck, and shoulder pain. It started shortly after I started treatment, which is 3 weeks now.  I had some neck pain before starting  not sure what from and the Dr.'s have no clue either. Anyways about 2 weeks in I was having severe pain on the left side of my neck which radiated down to my shoulder. The pain has eased up abit enough for me to tolorate it. I hope your pain has eased up too!
Helpful - 0
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