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.
Yes I definitely have more joint/neck/lower back pain. I did damage it orignally in two separate accidents but after years of physical therapy it was doing much better. I feel now that it is all "tighter" nowhere near as limber and the muscles pull pull pull trying to put something back into whack in several spots. That is how it feels although technically it's probably nothing to do with it. Gosh it's hard to describe pain.
One year post and SVR. 72 weeks of interferon might have killed the virus but I don't think it helped my body much. Of course, I am getting older now so it could be coincedental but...who knows.
I have it everyday, terrible neck pain. If I am up sitting, standing to long it gets worse. Chest too...but I think that is the fibromyalgia. After a few hours, I have to lay down. Thanks goodness for laptops!
I too have neck and shoulder pain. I treated for 36 weeks and have SVR'd. Also, i get numbness on the side of my body I am sleeping on at night. Pain and numbing in my hips at times will wake me up at night. It also hurts to touch, but feels better when I change sides and redirect my body weight.
Did your pain start mostly after finishing therapy, or did you have this problem before tx?
I also get pain and numbness along my side and shoulder when trying to sleep at night. I had never had a problem sleeping on my side before tx, but not, nothing feels comfortable. And when my neck is really flaring, it hurts to lay flat on my back....there aren't many options left for sleeping positions! The numbness, and limb weakness issue is really noticable. It does not feel like the same body that I used to have before tx! Too much pain, numbness, and tingling, along with just feeling much weaker in the extremeties.
Pre-tx, no neck pain. Early on in tx, felt a noticeable tension (not pain) in neck, upper traps; also noticed my midback spine muscles had a numb sensation; otherwise felt fine & worked out through tx. 1 month post-tx the mystery pains started – migratory, transient, no reason for them. They could vanish in an hour or minutes. I did fear fibromyalgia…had pre-existing lupus that caused no problems pre-tx. I’m now a year post-tx, did 52 weeks, did not even reach UD as far as I know (don’t ask, lol).
During this post-tx time also got a numb pinky finger (resolved now), wake at times with my whole right arm in pain, & still sometimes get the slab-like lack of sensation in midback. The majority of those “mystery aches”, that were mainly in my torso, but also occurred in quads, hips, glutes, seem to have passed…but the neck pain intensified, along with very tight painful scalene (muscles front of neck). Almost feels like cramping above the collarbone. The worst position is arms up + shoulder girdle elevated, as in trying to pull a sweatshirt over my head. Some days it vanishes, but it’s usually present to some degree. No muscle weakness through tx or since.
I asked for tests. RA was ruled out. Had 2 cryo tests, 1st one showed + but with a low cryocrit (was told you start feeling sx at a higher level than I had); the 2nd cryo test was negative. Tried deep tissue massage, which really showed how incredibly tight some muscles were. I switched to chiro - it cleared the neck pain/restriction instantly, for a day, & further sessions never brought the same relief. Finally saw the rheumy, who checked out the neck, noted a “significant nodule” in my rt trap; & advised me to take a muscle relaxant. Jury’s still out on this, just started.
I also requested spinal Xrays 2 months ago, an eye-opener – extensive degeneration, e.g. bone spurs, calcification, slippage of one disc. Easy for the doc to blame my sx on osteoarthritis, but the microtrauma that led to this didn’t happen overnight, & it just doesn’t seem to correlate with the intensification of the sx. Still on the hunt for answers, & I admire your quest for them DD, have read many posts here with my ears pricked.
I was struck by nygirl’s description of muscle tightness, & that has been what's puzzled me the most. I’ve worked out for 20 years, & am a trainer, so I know typical muscle soreness/tone, for me, & the tightness & rotating aches were definitely unusual. For the present neck problem, my Xrays show bone spurs at the foramen through which nerves pass…so I have to wonder at that possibility. I did speculate on the timing of the neck/trap tension, as it began when I started to spend much more time on computer researching...& I also wondered at the role a year of tx plays overall in the natural way we hold ourselves – aside from the nastier sx that immobilize us, constant fatigue over a long period of time can really do a number on our posture…& when one part falters, other parts compensate….lol this is my pers. trainer POV kicking in its 2 cents’ worth. In my case – some of what I feel could be the hcv, however didn’t have any of this pre-tx. If & where the INF fits in, of course I don’t know. But I sure have a lot more respect for it now than I did 2 years ago!
Just wondered if you’ve tried a cervical pillow, DD? for sleeping on your back…also, have you had spinal Xrays or nerve conduction testing?, & ever gone the rehab route (physio? neck, shoulder?) since your SVR?..................Janann
Sorry to hear of all your pain issues in your back and neck. I treated for 51 weeks and didn't notice a difference between pre tx. pain. I am 65. I have used a cervical pillow for quite a few years now. I'm doing yoga now and it's helping my back a lot. I think my back trouble is caused by prior auto accidents, inactivity (18 weeks on tx) and age. I relapsed.
You can rub arnica on any painful spots. It is a cream you can get it at the health food store. I hope you feel better.
I have not tx'd yet and have the neck and joint paint. also numbness and tingling in my hands mostly in bed at night. I believe this has to do with just having HCV and nothing to do with tx'ing. As you have posted in the past about HCV having way more affect on the body then just the liver, i totally agree with you. I think doctors will soon realize that this is not just a liver disease.
Thanks for the detailed response. My problems bear a lot of similarity to yours, and I think you would be surprised if you explored Thoracic Outlet Syndrome (TOS), in light of your problems in the shoulder girdle and nerve/ blood supply outlet areas. I have also found, through MRI's, X-Rays, Neurological testing that I have TOS, mainly due to cervical ribs that interfere with the thoracic outlet, especially when arms are elevated, or doing overhead tasks. There are many things (bony structures, fibrosing muscle tissue, enlarged first rib, cervical ribs, etc.) that can crowd the thoracic outlet, and cause many of the problems associated with using the arms in front of the body of or overhead.
I think my problems were probable more 'latent' or not always apparent before tx, and that the tx, for a variety of reasons, really exacerbated the TOS, and the cervical stenosis issues, etc. Lots of these issues are common in the population, but most people don't have severe symptoms. Somehow, we are now left with extreme symptoms for any or all of our underlying abnormalities.
Do investigate TOS online, and you will find a variety of sites and medical articles addressing this syndrome, and the damage it can do. You may need to do regular exercises for TOS, and also avoud doing things that severly irritate the thoracic outlet. Some people undergo surgery for extreme cases of TOS, since it can ultimately almost cripple a person over decades, if not addressed early on. The real problem though is: what did the tx do to us that brings out these problems in such an exaggerated way???
No neck pain here, however my mother has been suffering from neck pain and the kind of neck and shoulder stiffness and occasional numbess mentioned for many years. She does not have HCV. I do have lower back problems, however (muscular not nerve related), but then again so does my mother, and other members of my immediate family plus a number of friends my age. As mentioned, many of these problems are very common in the general population.
Janann, my brother who doesn't have HCV has also had numerous muscular issues, including night pain and has seen numerous doctors. So far no solution. Hope things work out for you as sometimes the solutions can be elusive with time often the best (and most overlooked) healer.
Re the lower back pain -- I had it prior to treatment but it was then resolved for many years until about a month after I stopped treating. Although it's impossible to know for sure my guess is that the relapse was caused either by the inactivity during treatment and/or muscular degeneration from the interferon. Or perhaps a combination.
I'm now almost two years post treatment and only in the last couple of months have I seen an improvement, although only 70-80% of where my back was prior to tx. The long recovery time leads me to believe that the interferon might have played a factor, but the noticeable progress in recent weeks leads me to believe that it will be correctable with physical therapy and time.
I appreciate your feedback on this issue. I also wanted to keep the thread active, so that we can get more feedback from the forum members. I would also include chronic back and spinal problems in general to my question. I would love to see how many with HCV have NOT had either chronic back, neck, thoracic, or related problems during their active HCV infection, or after their tx'es. I would be willing to bet that the number of problem cases would be significantly above that of the general population, for the same age groups. I would also love to see a large study looking at this issue.
As we know, many rheumatologists now routinely look for HCV when a new patient complains of arthritic, or skeletal problems. This leads me to believe that these problems must be highly correlated to HCV. I would bet we would also find that tx might add a few more problem cases to the overall percentages. Here again, where are the studies, and who is asking these questions? My neck would like some answers.
I"m a big believer in Ockham's razor, i.e. the simpliest answer is often the right answer.
In the case of HCV, if you didn't have a sympton pre-treatment -- and develop it during treatment or post treatment. Or if a pre-existing condition gets worse on treatment, or after treatment -- then in most probablity it's the treatment that caused the problem and not the HCV.
This is not to say that extra-hepatic symptons don't exist, I'm sure they do -- but so do tx-related symptons that often last beyond treatment -- and ironically in some cases they are the same. Take the metabolic syndrome for example. HCV supposedly makes it worse. But then again, so does interferon.
In my case I did have pre-existing neck problems pre tx, but my shoulder that I had surgury on years ago never bothered me until after tx. The aches and joint pains I still have are from tx, had them on tx and still do.
Do you work in a cubicle. I found after going to physical therapist that working in a cubicle for 10 years had finally caught up with me. He taught me a lot of stretching exercises and allowed me to indentify my bad posture and a bad habit I developed kind of leaning on my elbows. It took a lot of work and sticking to my stretching but it's help me quite a bit. The key is doing the work and staying steady and regular with it.
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!
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.
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?
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
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
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!!
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.
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
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.
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!
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.
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
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.
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!
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.
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.
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?
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.
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!
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?
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.
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
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