Muscle, joint pain, pre, tx'ing and post. a survey

After reading Double Dose's thread, I am wondering how many of us have muscle, joint and body,  pains pre tx, during tx and after tx. I know I started having problems during tx, but had many, many problems and surgery before tx, that never bothered me until I started tx. Now off of tx, I have fibromyalgia and lot's of muscle, joint and pains I have never had, or had many years ago and returned. So I am wondering, how many of us have problems with pain from muscle/joint pain now and when did it start. Just an anecdotal study, of course....just interested!  Thanks!

Linda

[CMcH]

I have mentioned in previous posts that I have a lot of joint pain and muscle tightness. I have not TX yet and have been DX w/autoimmune thyroid disease and recently they have found RA factor in my blood. I just had lab work to check for Cryo and to see if my thyroid is at a level where I can start TX. I am 1a VL 240,000 and biopsy of grade 1 level 1. I am very concerned about starting TX because it is my understanding it can exacerbate these preexisting conditions. So I would love to hear about others experience with this. At this time my hands always ache and it hurts to write, type and sometimes drive. My wrists and  elbows are problematic also. It is tight along my spine w/standard low back issues.
I have a very physical job that I am having to compensate and try to use my hands as little as possible. If it gets worse it will be very challenging to work. My biggest dread is ending up with another disease after TX that I didn't have before. Like you Linda w/fibromyalgia. That is such a difficult disease to manage. I feel for you. Try aquatic therapy like Watsu.
I know I could wait to see if something else comes up to TX this monster but I believe it is causing my autoimmune problems and what feels like to me excellerated aging. I used to be extremely active running marathons and now I can hardly run due to joint  pain

[DoubleDose]

Yours is an interesting and tricky situation.  As far as liver damage, and the lack of overall serious threat to your health, you probably could wait for the newer inhibitor class drugs to become a standard part of triple therapy, and end up doing a much shorter course of tx...maybe 24 weeks. BUT, you have lots of HCV related arthralgia symptoms, and the tx MIGHT either: make them better, leave them unchanged, or make them worse.  I honestly think you would have a good chance at getting rid of some of your issues, and since they are already a problem, and you will need to tx at some point anyway, then you might have more reason to go for it, than to wait.

You will not be able to predict whether the tx will have negative or positive impact on your extrahepatic conditions, but I think curing the active viral infection might make your body feel better in some ways, and ideally would slow the warring immune responses causing your problems.  Of course you have read our prior posts, and know that some people react unfavorably to the tx.  I will just say, I would do it again, in a heartbeat, to get the SVR.  I did 15 months, at high and daily doses, and then 18 months at weekly doubledoses of  Peg-Intron, Riba, Procrit, etc.  You may only need a standard course.  Decisions, decisions!  Discuss all your issues with a really top flight Hepatologist, who has had experience with these other complicating factors.  The more knowledge you gain, the easier it will be to make a good decision for YOU.

Good Luck.

Linda,  thanks for the survey thread...now you are initiated!  Let's hope for lots of participation.

Come on and chime in, forum members.  How about some more first time posters too!!!  We like new blood.

DoubleDose

[sfbaygirl]

My new Hepatologist thinks I had Cryo that is now healed. Interesting. I have my Fibro under control with Lyrica. Perhaps you can do the same, it works for me.  I don't think Lyrica effects the liver. You have a low VL and are a grade 1, as I am. Yes, I think my problems were exaserbated by tx. Migraines, surgeries on my shoulder, back. It seemed to start on tx and was worse after tx. Now that it is somewhat under control, I doubt I would tx again, although I relapsed. Perhaps with new drugs, better odds for relapsers, and less time, I would tx again.  Yep, I hear you. I wouldn't want to start tx given autoimmune and RA. I would wait. That is our choice. I too would love to hear others stories!  Thanks for posting!

Linda

[merryBe]

I keep telling you, all this autoimmune stuff is realated to pituitary...whichHCV compromises.  Your IGF-1 blood test should be 190.....mine was 40...meaning my joints and organs were not repairing themselves.
If you are legitimatey low for your age, then you have aduly onset pituitary dwarfism.
anyone can get it, from a head injury, t chemical exsure, to certain viruses....once the Pituitary stops working....everything begins to shut dowm. Since ging on HGH my fibromyalgia in gone and there's been no advancement of MS. check it out.

[harriettviv6437]

i have had fibromyalgia for about 6 years,the muscle and joint pain thru out my whole body, i would say it started after i had my first treatment of interferon, and just got worse as time passed. i also have swelling of my hands and ankles, they say its not arthritis, the specialist i go prescribed fentanyl patches for the fibromyalagia, they seem to help,but after 1 year i had to have the dosage increased.    vivian  

[jojoshj]

hi i am knew in this fourm..iam female 52 years old..have hcv 25 years ago,,my tests show  gen typ 1 grade 2/ iam always in pain muscle pain,dyegnus as fibromalgia,,try pegs and ribavr.for 8weeks only and stopped cuz my blood cell wasn't good..so iam suffring from pain taking every day strong pain killer.
thank you

[mikesimon]

Not before, during or after TX. I do have some pain as a result of my bike wreck. But, that probably doesn't count. Mike

[justme53]

JoJoshj, guess we're both new kids on the block! Howdy!

All: I have been pretty much pain and ache free until recently, except for a bout of sciatica years ago.The pain is not incapacitating and need no OTC meds at this time. But it's THERE!  Upper back, shoulders, upper arms for the most part. Hands when I'm on the pc too much at work. Stretching and massage helps, also warm baths. I'm not overly concerned right now, but it is niggling me a bit that it's lasting so long and perhaps a portent of things to come.

[CockSparrow]

I am the same as mikesimom, without the crash. The main Sx I had pre Tx was fatigue.
Gome now. No SVR but i feel a hell of a lot better than I have in ages.
CS

[Lady Lauri]

  Muscle pain and awful fatigue is why I kept going BACK to Dr.'s saying ...'SOMETHING is wrong' for a couple years, before finally getting dx'd.  I could not understand it and it was hell to keep being told 'your fine' while I would have 2-3 days at a time of every muscle in my body throbbing, aching. It'd come and go. the fatigue...I'd lie to people (feeling 'lazy') and say I had things to do and go home to bed OFTEN! Not knowing WHY was driving me crazy!
  Before tx that and my knee joints were 'bad', during (now) tx my knee's are better (??) but the muscle aches did get worse, is worse. Dr. say's I have no auto immune, so will get better after tx......HOPING so and will let you know about post tx. If it continues, I will insist on more testing.

LL

[Lady Lauri]

Hi, welcome here. I hope you are going to get into a liver specialist, after starting tx, stopping, still having problems.
  And, I'm sure you know this, but be careful with the pain meds! Yes, some of us need them, but do keep it to minimal use. Very easy to start taking 'just to take them' and not just for pain. I make sure to skip days, and still take only a 1/2 at a time -take the edge off- and than other 1/2 IF it doesn't help. Won't 'allow' myself more than 2 a day ever!
BUT, some have worse pain, so just be careful and please follow up with the Hep C.

LL

[DoubleDose]

Tell me more about how you were diagnosed for the pituitary deficiency.  I have been reading articles on Adult Growth Hormone Deficiency, and other similar diseases, which all seem to cover the same problem...pituitary insufficiency.  An article that I just read describes my current issues exactly!  Here is a short symptom list from the article:

Symptoms of Adult Growth Hormone Deficiency
A person who has too little adult growth hormone will have symptoms that include:

A higher level of body fat, especially around the waist
Anxiety and depression
Changes in the make up of the blood cholesterol. People with adult growth hormone deficiency have higher than normal levels of low-density lipoproteins in comparison to their high density lipoproteins. They also tend to have higher triglyceride levels. (Triglycerides are another type of fat that circulates in the blood and contributes to blocked blood vessels.)
Decreased sexual function and interest
Fatigue
Feelings of being isolated from other people
Greater sensitivity to heat and cold
Less muscle (lean body mass)
Less strength, stamina and ability to exercise without taking a rest
Reduced bone density and a tendency to have more bone fractures as they get older


This really hits the nail on the head for me.  How many HCV doctors are aware that this is a condition related to HCV or possibly Tx?  I would assume that my endocrinologist, who is tops in his field at Johns Hopkins, and has published several books, would be able to identify and treat this condition, if it is relevant in my case???  I am currently on Thyroid Replacement therapy with him.  I have noticed almost all of the above symptoms developing in the past few years, and the mid-waist body fat accumulation is pronounced, bone resorption in jaw, triglyceride increases, etc. etc.  Maybe this is one of the post-tx issues that should be checked out for people who develop these mood, fatigue, and energy related symptoms, with the other blood chemistry signals, etc.  

Please let us know what you have discovered, how your doctor figured it out, and how easy and expensive it has been using the HGH replacement therapy.

I am very intrigued by this issue, and it sure fits my profile so far.  I guess I need to visit my doctor soon.  Thanks.

DoubleDose

[R Glass]

Pre-TX I had severe muscle and joint pain along with occasional fatigue. I just wrote it off as “getting older” and thought everybody has good days and bad days. I do not know if it has gotten better after starting treatment, since I feel like **** most of the time anyway.

[sfbaygirl]

Interesting. Yep, on tx I had bad joint pains, mainly from the Neulasta. I would be down and out for 10 days.  I was put on fentayal patches after the hospital, I was in a big flare up of muscle and joint pain. Summer came and I wanted off that strong pain med. so I stopped. A few months later the pains came back and the rhemy put me on Neurontin, drove me nutz. Then Lyrica, which really helps and I am off pain meds, except for migraines and breakthrough pain. Pain meds really don't help the nerve pain in the muscles and joints. They take the edge off. The Lyrica is made to stop nerve pain and is not narcotic.

I had some pain in parts of my body that I had accidents on, before tx, but never like what I started to get on tx and now off. I am hoping it goes away, as some post sx's do, but it's been a year now.  

That pituitary info is interesting. What do you take for that?  My rhemy also gave me a script for Vit D, he said it would help with the pain. It was really low!  

[sldb]

I had severe muscle and joint pain pre tx, pain disappeared during tx.  Post tx pain (worse than pre tx) lasted 3 months, then went away, havent had it since. Swollen finger joints, hip, elbow, knee, and shoulder pain gone.

[sfbaygirl]

That is great news!  I know Jim who had skin problems on tx and after took a year or so to get better. I sure hope I do! I can't stand pain!  Thanks.


Linda

[paulalynn1965]

I have alot of muscle and joint pain. Was also told I have arthritis and Lupus. I am not sure which of my illnesses cause the pain. The backs of my legs and my right shoulder cause me the most pain.

[sfbaygirl]

What is it with that right shoulder?  I had surgery on the left...had problems, but now it is the right that is driving me  round the bend.  Have you been on tx?  Or post?  welcome, I haven't seen you here before.

[HARRYBEADS]

  I have had severe foot ,ankle, knee and hip pain for about 10 years know, the last few years the docs have gauged it at 8+ and have been treating it as a neuropathy, with morphine, lyrica and anti D's. An ortho wanted to risk looking in my knee, he found nothing wrong except the cartiledge was dark pink, he said it was full of blood, and he had never seen this before.
  Every year it would get worse, it got so bad three years ago that I could not work. The pains would start with use and cause muscle aches from hell, it took everything to get thru the day.I felt like a 90 year old man.The only relief was from ms contin and rest.
  The search for relief incidentally found Hep C, after treatment it is still there maybe up to a 9 at times, similar to a broken leg level of pain. If you have pain you should be treated at a pain clinic for it. A new neuro at the pain clinic now thinks it is MS or a myelopathy.

There is tons of info on pain and Hep C related to arthritis, cryo and neuropathy.I have read some studies connecting MS to the treatment and the disease it's self. It's all got a common denominator; autoimmune issues. MAYBE FROM THE HEP C VIRUS?


Harry

[Wassup]

Welcome newbees. I think you gunna love it here, most 'new kids'
... stick around. At least as long as I've been here.    

Linda, now you're giving YOURSELF homework. (Or was the pain study, HR's idea)?  Are ya tryin' ta drop of exhaustion??? OK wonder woman, here goes:

        As a virgin, (to Tx, I mean, stop laughin'), I started having joint, upper extremety, pain about two yrs. ago.  I'd wake up with swollen fingers that refused to bend. Took my AM meds, holding the water glass with both hands, like a two year old, or a raccoon.  I thought it was edema from drinking booze the nite before. It would go away in an hr or so.  Dr.s then said, 'arthritis, old age', well that shut me up. Then, about a year ago. When I first woke up my knees didn't like to bend. I'd waddle to the bathroom, looking like I'd messed my pants. Next, I began to have this sharp pain under my rt. lowest rib.  If I put on pantyhose, wash my hair in the sink, or tie my shoes, I'd have to straighten up real fast and gently rub that area.  I thought I might have an abdominal hernia.  New Doc, NP actually, felt it and said, I'm not sure if it's an abdominal hernia or if it's the corner of your liver I'm feeling.  Let's do some blood tests.  Well, the rest is history.

Back to the pain thing.  Of course, I had to stop drinking alcohol.  Then, once I was hooked up with my GI., and started taking Lactulose, (to remove the amonia (ammonia) from my blood) I began to feel much better.  Had to cut my LACTULOSE by 2/3rds to 1 tbsp ea. AM. It was that, or die of terminal dierrhea, (well, actually it would have been dehydration). First, My hands stopped swelling, (unless I pulled weeds for three hours). no trouble bending the fingers, no pain, I stopped walking with stiff legs, no pain, Slowly, I could ride in a car, SITTING UP, (not with the seat fully reclined, (no pain @ my liver.  I could even tie my own shoes.  I still have a stiff neck, and headaches, (car accident, '88). And my L humerus is still achy, (again, car accid. 88), I now have titanium @ humerus, and hdware. @ ulna and radius. my spine still gets achy, but not so bad.

Bottom line, I feel pretty good for a 'sick chick'. I think the Lactulose, getting rid of most of the ammonia, that my liver couldn't do on its own, has helped tremendously. Oh yeah, and quitting drinking may also have had something to do with it too.

TMI?   Good luck with your study,  do you ever sleep?  Many Big Hugs, Ant B

[Mikkimoe]

Harry - You have a good point. I mean it only makes sence that if this critter is eating at you for years and your immune sytem is constantly compromised in it's defence that it will end up weak and equals autoimune disease.

CMCH - My Hep C seems to be 36 yrs in the making and 14 yrs ago I developed Severe RA. To many aches and pains to ever mention as it it systemic (whole body). I am going to start tx soon but am still concerned about it getting worse and staying on my biogeneric RA meds which seem to be counterindicative to the HVC tx. I have apt's with two top notch docs....there has been no trials done with this so we are really at the mercy of our docs. I'm doing alot of research - will keep you posted.

[Wassup]

Hey sweetie,   My br.-in-law has really advanced RA.  He's not quite 50 yrs. old, and walks w/ a cane, and will soon be in a chair.  This disease is so absolutely awful, my heart goes out to you.  My Br. is in so much constant pain, but when you ask him how he's doing, he just says, "Oh, I'm fine, Honey". "How are YOU doing?"  He's sooo stoic.  When I see what he's dealing with, knarled fingers, spine curved in a 'C', etc. I just tell him,  "I'm doing good, Sweetie".  Then I say, "How about them Lakers?"  And THEN, we start being honest.  My biggest squeezie hugs are right here, just wrap your arms around youirself and kiss your shoulder, from me. Ant B

[Wassup]

Yeaaaa!! Good job, well done and bravo.  It warms me to the soul, when I hear of y'll getting er done.  Biggest Wishes for SVL to you both, Hugs, Ant B

[Wassup]

It will amaze you how quickly you become attached to your 'cootie pals' . I've just named all my friends that I share with, 'My Cootie Pals', I'm sooo grown up, (NOT!!)I TRULY DON'T KNOW WHERE I'D BE WITHOUT THIS AWESOME SUPPORT SYSTEM.  I love you C.P's   Hugs all around, Ant B

See, I can be all mushy even when I'm sober.

[jojoshj]

hi linda
thank you for your reply..i am going to see my doctor first of april going to cologne in germany  i am from UAE,i see him every six months,,trying not to take pain killer every day but the pain in my body is a killer..i have to move out of my bed..i exercis and and dohot bath ,but now at least i know that the pian in the muscle and joints is releated to hcv.
thank you
take care

[GoofyDad]

My situation is not unlike Wassup:  If I put on pantyhose, I ...straighten up real fast and gently rub that area.  ;-)

A couple more serious comments: I have chronic back problems that stem from hip replacement due to major water skiing accident 20 years ago. I still have the back issues (cramping and spasming) but for whatever reason they are less in the last two years that I am SVR. One possiblity is that I've lost muscle mass - less stuff to cramp up and spasm. Another is lowered overall inflamation (inflammation) due to viral suppression. And a third is that I have shed weight before and during tx.

I seriously question the validity of these informal poles though. Our responses are biased, and the participation is skewed. There is simply no way the outcome can't be seriously flawed. And I say that as a participant.

[sfbaygirl]

LOL Yeah, I do sleep sometimes. That brief was a killer!  Luckily, I can do most laying down, as my neck and shoulders hurt too much to sit up or stand for long.  This pain thing certainly goes along with the family thread. "oh, yeah I am FINE!"  This is what I hate.  Who wants to talk about it with anyone but our Cooty Pals?  

Harry, you are on Lyrica?  If it is not doing enough, perhaps go up on the dose, I know that works for some. I am glad to be off the morphine. I remember like 12+ pain and wanting to jump off the deck (couldn't make it to a bridge!) not really, but pain is so awful!  

I sure hope we all get some relief, somehow! JoJo, hot baths, exercise are great. Many times those pain meds don't even work!  

[sfbaygirl]

Love to see you in those panty hose!  You are right about the survey here. It is ancecdotal, of course. We don't have phases or arms...just hurting phases and arms!

[sfbaygirl]

Where do you get Laculose? That sounds pretty good!  

[Mikkimoe]

Thanks for the squeezy hugs....I really needed them today. Real bad body day. It's funny but I have always been so up - like your brother. Everyone is always amazed how much I can do in such bad shape (Horse shows etc).And always have had such a positive atitude but this Hep thing has got me totally in the dumps. Hate that "If I only had a Brain" feeling. I collect movie cells and Wizard of Oz has been one of my favorites. I use to be the Tin man because I always woke up feeling like I needed to be oiled (joints all locked up). Now I feel like the Scare Crow with the brain fog going on. Just need to see the Wizard and get fixed up real soon.

[H20Lover]

Hello there...

To answer your survey question......no pain before tx.  Now about to do shot 16 this week.  My hips, femurs and neck bones ache.....also my right and sometimes my left shoulder have an odd sensation.

My doc says it is because of the marrow supression and my low WBC/Neutrophils that cause this.  I also understand the interferon does it anyway and makes the flu like aches.  Muscles feel a little weak.

Doable though and nothing that tylenol won't cure.  Hopefully after I'm done the aches will go away.  

Pam

[sfbaygirl]

Love the handle! Since tx, I still drink lots of water!  Yes, I didn't have these pains before tx and my WBC and ANC went down on tx. Lot's of pain with the Neupogen too. What I am wondering is why do I have these pains worse after tx. They come as flare ups and I finally agreed to the Fibro dx. These pains are much worse than tylenol could help. Thankfully, the Lyrica has really helped. I just talked to someone who txed in O4' is SVR and is dx'ed with fibromyalgia. She didn't have it before.

[H20Lover]

Actually the handle was meant to represent my love of water, swimming boating etc for I live in Florida and love everything about it.  A middle aged beach bunny!  Ironically I then realized the connection to "drink lots of water"!  So lately I am wearing more on the inside than on the outside!

Other than not achieving SVR having permanent sides really scares me.  I am sorry to hear of your lingering ailment.  Hopefully more time will take care of that.  

It truly is a nasty disease and I wish so very much for a reasonable cure that will work for all.

Take it easy!

Pam

[jojoshj]

thank you 4 ur advice linda,

[oyasin]

pre tx... degenerative disc, lower back 12 yrs of managable pain
            progressivly worsening joint pain, 18-20 yrs. also managable
            muscle pain normal for my line of work and age
            (57 year old carpenter)

during tx (13 wks only)  all pain completely gone. really

post tx.. took about 4 days to get all the old aches back, lower back is still not too  
             bad yet.

David