Question regarding Stiff Neck and Shoulders, pre-tx, and post-tx. For Everyone.

[DoubleDose]

I was wondering how many of us have had regular neck problems over the years, and whether this seems to be a common symptom of HCV, and also a symptom of interferon therapy, and post-tx.

I know that from early on in my initial HCV infected years I had frequent bouts of stiff neck, often to the point of being unable to turn it either direction.  This, along with shoulder pains between the shoulder blades and up into the lower neck, has always been a hallmark symptom for me.  I find that now, even three years after tx, and becoming SVR, I still have periodic bouts of this stiff neck, along with an inability to sleep on either side, or on my stomach.  It seems that doing so causes severe neck, shoulder and arm pain, and nerve dysfunction.  I hate sleeping on my back, but it is the only way that works anymore.  My stiff neck attacks now seem to come 'out of the blue' without correlation to physical exertion, or strain.

I still believe that all or at least a great majority of my decades of neck, mid-back, rib, and lower back pains have been due to the original HCV infection.  In my late twenties I has bouts of severe joint pain that would move from area to area...hips, lumbar, neck, ribs, etc.

How many of our members have experienced similar problems, either before doing tx, during, or after tx, whether you SVR'ed or not?  

How many of our members HAVE NOT had significant neck problems (or back problems), recurring over the years?

I appreciate any and all input on this subject.  An informal survey like this can provide lots of information for all!

DoubleDose

[returntosender]

Definitely had neck pain prior to tx, stiff neck and difficulty turning my head.  This went away after I cleared the virus, about a month after starting tx, but came back big time towards end of tx.  By the time I finished my neck hurt constantly. Now 4 months post and still virus free, most tx symptoms have left but neck pain and stiffness do remain, not to the extent that you describe, but irritating nonetheless. I still have some dizziness as well and tend to think that the neck pain and dizziness are somehow connected - nerve irritation or something like that.

[Upbeat]

Come on you guys!   A stiff neck?  Sometimes a stiff neck is just a stiff neck.

                                                       Ron

[Myown]

Yes, I have it in my right shoulder usually when I go to bed it seems to annoy and getting up in the morning. durring the day its ok. Hips and legs sometimes are extremely painful.It hits me out of know where and then leaves. Sometimes for a week, then a break from it. Weird.

If you look below I opened a thread 9/8 "Bone pain"

I'm not tx yet, so its not from meds...no doubt it is from the virus.

In the commentary of a hair analysis that I had...this was prior to me knowing I had hep,, it stated that I had excess calcium(loss) in my hair and gave a few reasons of possible causes. The last 2 causes were hepititus C and cirrohsis. Little did I know how on the money it was. Didn't think hair analysis could be so accurate,,,boy was I wrong about that.

Had a dexa scan and it showed osteopenia. Shocked me. I am in shape,had always been healthy, athletic etc. So, I feel it's the calcium being pulled and also malabsorption of vitamin d, due to the liver's condition.

Vitamin D is fat soluable, so we have to watch intake of it because of our liver, but i am taking 1,000mgs, which is high, but i have to try to replenish. My primary doc wants me to take more, but I don't think thats a good idea. Sitting in the sun for 20 minutes a day with as much skin exposure as you can..face, legs arms is beneficial. 10,000iu in 20 minutes time.

My neck gives me problems, but the worse is the shoulder and legs/hip.

[DoubleDose]

I also get the dizziness symptoms, and feel that it definitely is connected to the neck problems.  In fact, when walking, if I move my head right or left too quickly, I feel off balance and dizzy.  I can feel the pulling from my cervical spine up into my head, and it heavily afftect my equilibrium.  I also sometimes feel it from inside my eyeballs, down into my neck and shoulders...sort of like a burning and stiffness, both in the eye, and surrounding muscles, and the entire head and neck.  Strange stuff, and not very pleasant.  It may be one of the 'autoimmune' reactions previously caused by our bodies' reaction to the HCV, and later in reaction to all the interferon.  I think our systems learn to become over-revved and easily triggered to pump out natural interferon, and other chemicals, at the slightest stimuli....probably trained by the massive amounts of interferon we used to stimulate all these responses.

My body does not 'work well' after tx, and often feels tight, herky-jerky, and painful.

Thanks for your input!

DD

[DoubleDose]

Come to think of it, my back went out in the spring for several weeks, and over the past two months I am getting lower leg pain again just like before tx....cramps in the lower calf and foot (both legs), and often feeling like it goes into the bone.  Hey, when I think about it, I must be a walking basket of pains and symptoms!!!  I tend to ignore lots of the physical stuff...but when I really do an honest self assessment...there is a lot going on with my body that does not feel good, nor normal!

Thanks for the comments.

DD

[Myown]

You said."often feels like it goes into the bone."

You probably feel this same weird thing that I do. I tried to explain it to a doctor, prior to knowing I had hep. I told her..... "It feels like something is being suctioned out of my bones in my hips and legs."

I know that sound weird the way i said it, but it is the only way to describe it...and when you said you feel like it "goes into the bone," you may be feeling that same thing.

Strange sounding to someone who may not have experienced this, but if you felt that, you know what I mean.

[couldn't think of a nickname]

This might be of some explanation.
The right shoulder blade area (rhomboids I believe) are usually the area that responds to liver inflammation IIRC.

I get a stiff neck, sore shoulders, sore traps, dizziness, etc.
The virus is a toxin. Toxins get stored in muscles. Trigger points are muscle knots with toxins involved.
This is why after a deep tissue massage, they tell you to drink plenty of water for a few days after. To flush out the toxins. Muscles have a memory too.
For example, for a couple of days recently, I had really no soreness at all, which is quite unusual. Sometimes the areas would hurt quite a bit. Without that pain, my body actually felt strange, and my chiro thinks it was due to my body being used to the pain and tension.
Do an internet search on trigger points of the following muscles:
Trapezius, levator scapulae, rhomboids, scalenes, sternocleidomastoid.

Sternocleidomastoid (SCM) connects to the sternum, clavical, and mastoid process. Mine has issues with trigger points. SCM trigger points, as well as trapezius, can cause dizziness, nausea, balance problems, just to name a few. The dizziness is caused by when your muscles send differing signals to the brain than the eyes do.

If you get a massage to work them out, I would be careful about how deep they go at first, that can actually cause more stiffness, especially at first. The longer you have them, the longer they take to work out.
You can tell if it is a trigger point by pressing it. If it reproduces the symptoms, especially if it sends pain elsewhere, it is a trigger point.

Another example: tension headaches often come from the neck muscles. Carpal tunnel symptoms often start with the scalenes in the neck.

I would not be surprised, that after years of having the virus, and then the toxic meds, that there could be quite a bit of waste material that at least contributes.
In Simons and Travell (I have the medical texts) they do mention viruses as being a perpetuating factor, and having a role.

I also have the Trigger Point Therapy Workbook by Claire Davies, and he is excellent, and the book is cheap. Maybe less than 15 dollars. With some tennis balls or a Theracane, or both, his workbook will show you how to do the work yourself.


I know this is long, but this is a funny anecdote. The massage therapist was working on me one night, and she was having problems with dizziness. She stopped several times due to it, and I could tell it was really disturbing her. So, I told her it was probably just trigger points in her neck. It happened again, and she was doubtful about that, so I told her to sit in front of the table (I was laying face down). Even from a bad angle, I hit the Posterior Scalene where it goes behind the trapezius muscle, and she almost tilted over. I did it again, and she had me stop, because it was making her dizzy.
She should know more than anyone the symptoms, and does, but unless you go through it yourself, it is harder to understand.

[GoofyDad]

I lost the stiff neck when I stopped driving past the nursing school at lunch time. Back stopped going out when I stopped dating back seat Betty in high school. Same with that pesky bone sucking sensation.

Sorry guys. Sometimes I can't control my fingers.


PS I do have a chronic stiff back, but I don't blame the hep...

[susan400]

Double Dose,

I get the pain right smack in between my shoulder blades.  Also, my legs hurt below knees.  Left jaw hurts when I chew gum or eat something that I have to chew a lot.  But, TMJ was ruled out. Even though it's in the TMJ area.

Susan

[copyman]

i also have joint pain mostly in the neck, right shoulder and sometimes right mid back. i have not started tx so i think this is what most have when infected with hcv. if i play a round of golf i hurt all over for 2 days and exhausted.

[tulsatime]

You know this is funny you mentioned this cause I have been meaning to ask you about your shoulder blade pain. When I was on my first treatment and about 3 weeks into it. I had such a pain in my right shoulder blade, if felt as if it was the connecting tissue between the spine and right shoulder blade. It was such a burning senstation, and it never let up. I couldn't do anything, I couldn't vacuum or even try on cloths, the only relief was to lay on the floor on my back to take the pressure off. It lasted so long into treatment I had to stay in bed most of the time.  It finally let up the last couple of months of treatment, but it is always there just waiting to flair up. I also have hip pain. But lately I have noticed my feet hurt or maybe it is the ankle can't be sure but hard to walk after I have been sitting. I sure hope my shoulder pain does not come back as bad as last treatment!! Did shot 4 tonight, Talk to you later, Debi

[prettydamscared]

I've never had any back, neck, shoulder pain or anything like that except when I was sleeping on a really worn out mattress.  Bought a new one and haven't had a single problem since. I've had the virus for at least 25 years. However, I am getting some serious riba rash that's making me absolutely crazy.

[Forseegood]

Hi, thanks for sharing your info, mighty interesting, can you tell me more about your hair analysis? what was the setting and doc you saw about this? thanks and have a good weekend...(I've had one and want to compare notes)

[SoCal Lady]

I have not experienced the symptoms you describe, though I've had HCV for 30 years.  The only symptom I've experienced is fatigue....

[dyce]

Ha dd, knowed a cat got some viagra stuck in his throat, give him 1 heck of a stiff neck!!!

[cajunlady]

I am shot 38/48 tonight.  I was okay at the beginning of tx and as I headed for the last of the weeks my neck is seriously out of wack.  It is like solid rocks in my should and neck and some serious hurt with it.  I get these headache and not like at the beginning of treatment.  The stiffer my shoulder and neck get the worst the headache.  I also get numbing in my arms at times.

Now on that note.  This reminds me of when I herniated a disc in my neck.  For years I had the same symtoms only it got to the point that my face was going numb too.  Had bone fusion and plating C5-C6 about 3 years ago. Have not felt this pain since.  

On this tx about a month or so ago, I fainted in my bathroom in the middle of the night.  I hit my head very, very hard.  I have had a headache ever since and the shoulder and neck is getting tighter and tighter.  I am having my arm numb again.  Now, I wonder if when I hit my head that night that I did not upset the vertibrates above 5-6 that were already weak.  My doctor said this will cause this type of pain in shoulders and neck and all muscles.  

If this is normal on tx, I hope it does not stay with me after tx.  I have had years of this pain and headaches before something was done.  I do not think I could live with those headaches again.  

I can so relate to what you are saying.  Good Luck and let me know if you find more out on this subject.

Cajun

[Morgaina]

How the heck do you people remember everything you wanted to say by the time you're at the end of the thread???

I only remember that I have had alot of problems with base of scull and neck for pain. When I was pregnant, if I looked way up for a bit, I would pass out without warning. My VERY worst migraines involved that same area so much, I thought I could stroke if I moved. But then again, my body is not the efficient machine I hear about around here. I think I would get bored without chaos anymore but DD, I'm always ready to start talking about hepc and medical history, although I know it couldn't possibly all be connected to hep (or could it?)

[PasoPerson]

I've not had the neck & back pains you are suffering with.  I'm sorry to hear that and hope somehow you get some relief.

What I do have, 6 months post-tx, is fatigue to the max as well as what I call FTF (failure to focus).  Makes it hard to do my home business, for sure ... I build and maintain web sites.  LOL

I do hope you get some relief, for sure.  DD with something potent, muscle relaxant maybe?

[way]

Probably had HCV for twenty years and had shoulder pain a plenty but always thought it was due to the work I did. I also had other related tendon problems like carpal tunnel etc. Also hammer finger and hip pain. Most ALL of this has resolved since beginning TX!!!

[GrandmaA]

Trigger points are the same as the Safety Energy Locks in Jin Shin Jyutsu (acupruessure). When you go through chemotherapy there are many points that can help you get through it. Holding the inside of the knees is one of them. You can cross your arms or not, whatever is most comfortable. That point is the prime mover. I plan on doing lots of Jin Shin Jyutsu on myself when I start tx soon and also to get others to do it on me.

[couldn't think of a nickname]

morgaina, you are welcome. Good luck with that.

Grandma, I think I read that 80% of accupuncture points are at common trigger point locations, which is probably why there is so much in common.
I know many would be shocked at the wide variety of problems trigger points can cause. If they get active, they refer their pain elsewhere, which triggers satellite trigger points, which refer pain elsewhere, and the pattern goes on. Almost like a chain reaction when it gets bad, and that was something that happened to me last year.

[Myown]

Hi,
The hair anal.I had done as requested by a holistic MD. It was Great Smokies Diagnostic Lab.

I would imagine,but I haven't checked this out, that people can send for info and mail it in on their own without a doctor.

Did you get your results yet?

I wonder if we would have similiar results and if other results are attributed to liver also.

I'll quote the commentary on calcium..

"Calcium is above the reference range. Hair CA levels correlates with long term dietary intake, absorption from the Gi tract, and retention, However, hair Ac does NOT necessarily reflect current serum calcium or calcium ion concentrations and may not have a linear or direct relationship with tissue deposition or bone density."

"Elevated hair ca is consistant wit chronic hypercalcemia conditions, hyperparathyroidism, chronic hypervitaminosis D, vitamin D deficiency with osteoporosis, renal failure, hyperglycemia and diabetes, HEPITITUS AND CIRROHSIS.

Neoplastic disease may feature elevated hair Ca. In osteoporis, hair calcium is elevated to some degree while Ca/Mg ratio is notably elevated. Symptoms consistant with elevated hair Ca vary with conditions.

Hypercalcemia may feature lethargy and muscle weakness, hypotonicity and constipation."


Lead was way above reference range. Uranium was also high as far as what was in the "toxic elements" column.

What was so interesting to me was that, yes I have hep, I have ostepenia, I have vitamin D defiency,constipation. hopefully i don't have cirrohsis. I have to take the vitamin D, but unfortunately D also causes constipation. You try to remedy one problem and it causes another problem.

I take liquid cal/mag and vitamin D with my other vitamins daily, so there is no doubt in my mind that my body is having a malabsortion problem as seen with most or all who have liver problems.

I also sent for  a hormone profile at saliva test.com. It showed I am extremely low in progesterone. No way am I going to take synthetic hormones. Found a very good website from the back of Dr. John Lees book "what your doctor may not tell you about menopause." I ordered natural proges. from them (emerita.com.)It seems to be a good company Oregon. Woman owned, women operated.Now that's a place to go for a job, no annoying men. lol

As far as the bone loss issue,the low progeterone would also cause bone loss.Also,so many woman get breast cancer at this age and their progesterone being low definitely plays a role, if not THE ROLE.

Most conventional MDs will give a woman estrogen at this time, which makes no sense,because with the low progesterone, they are estrogen dominant and adding estrogen to this can only a problem and lead to cancer.  

So that's the story. Do you ever feel like you wish you can turn your body inside out and turn on the garden hose and wash it out? I do.

Take care, good to hear from you.

Let me know if you calcium comes back high from you hair test. By the way, my blood tests show calcium in normal range. Just as they said, hair calcium doesn't reflect serum calcium.

[MissMiss]

I don't have time for a lengthy post but will definitely add a big YES to most all you say.  Would love to discuss further too.  

Note that I am only 4-5 weeks post tx.  Pre-tx we could have a good conversation.  Having an MRI in Oct which could be enlightening on some of the shoulder pain you talk about.

miss

[couldn't think of a nickname]

Your migraines could be the result of trigger points and muscle tension in your upper trapezius muscle. Pain is referred up to the head. IIRC, migraines without aura are typically related to trigger points.

Also, I neglected to mention before, that myalgias are a common symptom of HCV. I said myalgias because fibromyalgia can sometimes be difficult to distinguish from chronic myofascial pain syndrome (CMPS). Many times trigger points and the tender points associated with fibromyalgia are related.

I have actually talked about this with my gen. doc, who used to be a physical therapist, and he thought my theory was plausible. That is, aches, pains, myalgias, dizziness, balance problems, are symptoms of HCV and also trigger points. Viruses are known perpetuating factors, and viruses are myotoxic in nature, and a trigger point can be considered stuck energy and toxins.
Unfortunately, those who are experts in trigger points probably don't know much about HCV, and those who are experts in HCV, probably don't know much about trigger points.

[Morgaina]

I started having auras when I was14, long before the headaches. First one in a math exam (at 14!!!) I was freaked, it was only one of the few times I was conpletely blinded. I dont know the musculature vocab but I know how right you are about how hurt muscles and others compromising for them can really mess you up. I have a massage guy when I can afford it. Thanyou for your input!

[GoofyDad]

What I do have, 6 months post-tx, is fatigue to the max as well as what I call <i>FTF (failure to focus). Makes it hard to do my home business, for sure ...</i>

<b>Can I get a witness? Amen Sister.</b> I'm out of town on biz next week, but when I return I may start looking for drugs. It's crazy......

[DoubleDose]

You may be closer to the truth than anyone in the medical community is willing to admit.  If you have read my posts in the past, I have speculated much the same.  The many research articles that have been published over the past two years, claiming a residual, persistent replicating virus remains in all of us, long term, years after SVR is achieved, may well be right on target.  This residual viral infection probably is kept in check by our immune system on a daily basis, and probably contributes to a steady-state immune system reaction in us...resembling autoimmune illness.  But, then again, the medical community still does not know what causes autoimmune illnesses themselves, like Lupus, RA, Sjogren's, even Psoriasis......so maybe there are other viruses as well, that are chronic, and cause the wide variety of autoimmune illnesses out there, in this very same fashion.  Many researchers have long speculated that this is the case, but have been unable to isolate the specific virus or viruses that are the cause.

I am always AMAZED at how many steps behind our own logical thinking and insights that the medical community seems to be.  They are not asking the questions that we are, and are not even testing some of the obvious theories regarding these issues that we are surfacing.  And down the road in a few years, when the 'persistent viral' theories and research are finally proven true by the small groups of dedicated objective research scientists, the medical community will start 'parroting' this information as if they had always known it.  Meanwhile, they are 'deaf, dumb, and blind' for the time being when it comes to issues like: post-tx long term symptoms, persistent HCV after SVR, virus infecting other organs and systems, even symptoms caused by HCV itself, as described by thousands of HCV infected individuals.  But whan something new is proven to be true, they will tell you about it as if they knew it all along......not even acknowledging that you may have been the one to suggest the idea to them...years before!

I am sorry to say that there is much more left to uncover regarding this virus, and this disease, but at the rate the medical establishment is 'digging' for answers, we may be into the next ice age............

DoubleDose

[DoubleDose]

Welcome to the MRI club!  I had a bunch of them done in the first year after finishing tx.  Everything was killing me....neck, shoulders, midback, lower back, etc.  I had night time arm pain and numbness, lots of nerve pains, and a variety of disturbing neuro-muscular problems.  I thought I had relapsed month after month, even though every follow up PCR was undetected.  Then (after a few years of SVR) I realized it must have more to do with the interferon treatment than anything else.  So then, why all the symptoms BEFORE tx, one might ask?  Well, I think it is probably very similar to the interferon symptoms...I would assume that the HCV in our bodies triggers a wide range of immune reactions on a chronic, ongoing basis, releasing 'natural interferons' similar to when we have a flu virus.
So, possibly the effects (sx) of HCV end up being very similar to the effects (sx) of interferon therapy.  The remaining question is this:  Why do we still suffer all these auto-immune, interferon-like effects long after both the HCV and the Interferon have been removed from our systems???  Possibly the interferon, used over such long courses, provokes an ongoing, steady state of 'auto-immunity', or 'natural interferon production' that continues long term even after the external interferon has been removed.  Maybe this is the reason for so many post-tx after-effects and bothersome symptoms.  Most sx seem to be similar to autoimmune disease when you think about it:  joint pain, fatigue, depressive and anxiety related episodes, brain fog, sun sensitivity, skin problems and rashes, etc. etc.  Look up Lupus, and Sjogren's, etc. and look at the symptom profile...then look at post-tx problems for many of us.  Lots of similarity.

DoubleDose

[Myown]

DoubleDose said:

"Possibly the interferon, used over such long courses, provokes an ongoing, steady state of 'auto-immunity', or 'natural interferon production' that continues long term even after the external interferon has been removed."

Just a thought I had...since the Pcr test cannot measure down to "0" maybe there is a small amount of undetected virus that is left in us, that our body continues to fight with our own interferon and that's why some feel like they are having tx sx even after tx.

That is what is tying in to your statement about natural interferon production continuing long term, but,,,my theroy is not that it is "stuck" in this steady state of autoimmunity, it is just doing its job,,,,cleaning up the residual hcv? just something to ponder. I could be way off in my thinking, but who knows.

Those who relapse may do so because their own natural interferon wasn't strong enough or immune system too weak to continue to kill off small left behind particles of hcv, IMO. That's why, IMo I wouldn't think alcohol or anything that can lower your immune system after tx would be wise.

This is just a theory I have and when you mentioned above comment, wanted to throw it in to the conversation.

We now all know about the possibilites of occult virus, so to me it makes sense in a way.

By the way, the supplement "lactoferrin" is supposed to help with our own interferon and I have even read some holistic doctors say that if you take it with tx, it will help the interferon stay in your system longer. Who knows? maybe? I want to google and see if i find any more info and I am trying to find the article I read this in.

[Morgaina]

It amazes me how human beings can completely submerge themselves in a politic, religion or race to come up with an enemy that needs to be feared and fought. We're awfully good anhialating ourselves but the virus is our one enemy that could achieve that. Peace to us all!

[Myown]

One more thing to think about....it always made me wonder why there wasn't a real explanation given as to why someone (who is not tx as yet) can have a pcr that fluctuates so much...can it be the battle of the body trying to clear the virus. The doctors all just tell us.."don't worry about vl, it can fluctuate, pay no attention)

Have they considered it may be fluctuating because our own interferon is trying desperately to clear the virus and some days it kills off alot of it, maybe only to have stress cause the immune system to weaken and the vl to rise again?

Someone mentioned, maybe it was you (might have been GrandOak or 52tele, can't remember) they said that just before they started tx, their vl went up to 20 million, which was way above their original pcr, if I remember correctly.

My theory would be...the anxiety of the thought of tx caused the immune system to lower and the virus went wild replicating.

Sounds logical to me.

Have a good weekend

[Latvian]

Hello in the U.S. I'm from EU nice to read everyone and sorry to hear about resudial affects and various pains,one hepatologist in Bruxelles told me 20% tx takers develop this sort of complex resudial affects of TX,after tx.
It frustrates when you are 22 and already 2 tx are behind and the SVR is YOURS,but continue feel broken 3 years after.True there is not a thing that the docs would tell how to change it,as they feel they work is finished here..What can we ourselves do for the situation?You say 'nothing-see if time is factor' perhaps we all togeher should think about some recovery scheme as it's clearly that the resources must be restored and some right activities could be the way out ! I defenetly know what needs 2 be done,but it's not just so easy to pack your bags and go to Tibet or on the thin end some sanatorium for a long time .Would love to hear back from you and thanks.
ps
is there any young too with this problem i wonder?

take careeee

[Myown]

Hello and welcome to the forum,
Yes, it seems that some people do suffer long lasting effects after tx is over, but I have read on forum that many feel much better after tx.also, so it seems we don't know the outcome until tx is finished.

You are 22? You have cleared, correct? That is good. I hope you regain your health completely very soon.

[hippygem]

I have the neck and shoulder pain, been told it was arthritis, which can be caused by hepatitis c.
Had to go to the doc recently and he said it was tension and stress.
Who knows, all these doctors/researchers need to get into looking at the other parts of us that this virus destroys eg: brain, other organs etc.

Linda

[Thornebird]

After treatment (didn't work for me and I was almost incapacitated during the entire time), I have developed Chronic Fatigue Syndrome and Fibromyalgia, which I believe was caused by the treatmet.  During treatment I lost about 30 pounds, it caused my periods to stop (and I have not gone through menopause yet, 5 years later).

It started with muscle spasms and pain occasionally, steadily getting worse.  Now I have mnoderate to severe pain every day and am constantly fatigued.  It feels just almost exactly like it did when I was on treatment.  My body feels poisoned.  I wish I had never taken the treatment.