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Posted 2/28/2012 4:17 AM (GMT 0)

I have been reading through different forums , Like I have seen I could post on many ,  To start In 2000 spent a year trying to find answers and found I had hepc, 2001 I started my first treatment, Relapsed 2002, 2003 I did another treatment for another year each time I did these the side of affects of pain was terrible, relapsed again took a year off and did another treatment in 2005 same story and did another 2006 and after a year cleared in 2007, I have never felt well again, I do have some hernated discs 4 of them but they are not bad enough to have surgery,  I have been treated with lyrica, But My gp does not like giving anything like that, These last few years have been such a struggle for me I fight migrains which I just went to a neruolgist for and they tested me for MS  I had sytoms I also has some lessions in my brain But the spinal test came out normal, And I have figtiuge joint pain tired But cant sleep because I have insomnia and also when your in pain who sleeps the only place I feel like I can rest is in my bath tub and I sleep alot in my bathtub, and Have ever since I was on treatment, I live for heat and ice packs, They also found that My ana test was positive so they  thought maybe lupus But other tests come back normal. But on the lupus Forum sounds like I might need to go to a rheumatologist, I work a very high stressed job at a pharmacy long hours , Im so tired of being tired  and having fagituge and pain,  I know that through support groups They were my life line while dealing with treatment for hep c, I guess i figure maybe it wiill help now, I feel as if im going crazy at which way to turn , I have a bit of this or that but not  a answer, I can deal with alot if i know what Iam dealing with, if that makes any sense,I try very hard to ignore things and try not to let it affect me, But I feel if Iam living half a life and at the end of the day Im so done, my days off I cant even make myslef go any farther, So I feel like Im living half a life, How do they test asomeone for chronic pain or is like what Im already doing ,  Thanks for having a place t post

always Renee

Posted 2/28/2012 4:23 PM (GMT 0)
First welcome to the cp forum, the place no one wants to be but all are glad it here.  I am Kathy/nini53, I am 58 year young, I was diagnosed with hep c many years ago, but have never had a flare up, I believe I am a carrier, at least thats what one doctor told me, and as I was diagnosed some 15 years ago, and have never had a flare up and my blood work for my liver is always good, I dont worry to much about it.

I would worry about sleeping in the bathtub, this I am sure you know is potentially dangerous, for many reasons, so please be careful.  Have you ever been tested for (excuse my spelling on this )Epstien-Barr, I am not sure how or what test you would take for that, but you might look into it, especially with you fatigue.   Also I suggest you try to find a Pain Management doctor, gp's, are reluctant to prescripe medicines for you that a specialist will do.

Good Luck to you and take care, glad you found us,

Kathy

Posted 2/28/2012 5:42 PM (GMT 0)
Hi Renee and welcome to the chronic pain forum. As Kathy said, we are glad that you found us but sorry that you have to be here. Thank you for sharing your story with us. We all have a story to tell as to what brought us here, but one thing we all have in common is pain and we can relate to life with chronic pain.

You mentioned you were treated with Lyrica by your gp, who really did not like rxing it. Is there a reason the gp did not really want you on Lyrica? Did the Lyrica help you?

I have Lupus and can tell you first hand to find a good reputable rheumatologist. It can be very difficult diagnosing different types of auto-immune disorders and you sure want someone in your corner that knows what they are doing too. I know people can have a positive ANA, however, everything else can be normal, meaning the positive ANA does not mean its an auto-immune disorder. There are some that can have a positive ANA ans have it repeated and it come back normal, and there is a such a thing as a false positive. This is where a good rheummie comes into play and let him sort through it all and run the next appropriate tests. Don't let all of this discourage you, keep at it and you will get answers.

Another thing people with CP suffer with is depression. For some reason CP and depression go hand in hand. Many times after getting on some meds for the depression you see a reduction in the pain level. If you feel depressed don't hesitate talking to your dr.

If your GP is not willing to help you out in the pain dept, then I would ask to be referred to a PM dr. Those guys are trained to handle patients that suffer with all types of pain. There are different types of pain too, its not a one size fits all. In the mix of this someone can figure out what is causing you all of these problems.

Anyway, I wanted to pop on and tell you welcome aboard. Please keep us posted on how you are doing.
Posted 2/29/2012 3:53 AM (GMT 0)

Thank you so much for the welcome,
 My Gp is a old fashioned Doctor Not that I dont like her I do, I had a hard time getting used to the lyrica but it seemed to help, Yes I thought about getting on antids again being I went off everything in 2007,The neuro Doctor says she doesnt believe in fibromyalgia, She told  me that it was a cop out diagnosis when a doctor cant find something wrong,  So dropped that  talk.After dealing with hepc and Doctors and people I have  been shy to speak about pain For my first doctor I felt labled me, And I guess alot of people do, I had stage 3 liver disease before Treatment but My liver has been in good count these last few years, I had no symptoms of Hep c until I was put on Lamisil for toe fungus  My alts looked great before that it made me sick I took it 3 months I never felt good after those three months when I started feeling  really awful I told my doctor  she needed to fix what ever was wrong and she said I was depressed and put me on Serzone which really did  a number on my liver, So anyway enough of that, Over these last few years odd things just kept creeping up that drove me to think Im just not right, I kept falling walking along and its like a had no feet , I went to the foot doctor he said I had an extra bone in my ankle and a sist Major foot surgery, It didnt help me with my tripping or falling, LOL So I just assume Im a big clutz, Then I started having this thing when I move my head this electral shock feeling all thru my upper body, and at night when I lay down I would get this loud bang in my head a bright light and my arm would fly in the air LOLOLOL and let me tell you its still sounds crazy trying to explain it, So I thought maybe my brain is just really over active, and was worried about seziers I drive alot for my job also. also in this last few years I break out with rashes in my hair just everywhere so They thought childhood exema in my 40s, Ok maybe I thought, So that is why this new journey,  I bought a pool ILOLOL I dont sleep in it, evan though I would like to sometimes But it seems like being in water your weightless sometimes seems like the only place you can feel almost no pain, I did find a rheumatologist, A  patient we have has been going to him for 14 years and says he is great, So I will try to get an appointment this next week,It would be nice to find answers maybe some relief my family might enjoy my company again And I theres Maybe I can learn alot from these forums to improve my life.And go from there I do thank you  kathy and straydog for your replys, For letting me share , And Iam always grateful for input, Have a great night

Renee

Posted 2/29/2012 5:57 PM (GMT 0)
Hi Renee, I am glad you will be seeing the rheummy next week. If you have Fibro this is a dr that can diagnose it and give the proper treatment for it, along with checking out the auto-immune stuff.

You are not crazy by a long shot, you just have not had good medical attention to have your issues addressed and handled correctly.That in itself is a real problem and you may have to start looking at changing drs to get a handle on this. Its always hard to find good drs but they are out there. The GP of yours that is old fashioned or old school as they say is really not giving you good medical care. He may be good for what I call a cold & cough man and thats about it.

I have herniated disc in my neck and if I lean down to lift a pan out from under the cabinets, I get this electrical shock feeling you are talking about. That is a good way to describe it too because that happens to me when lifting out a heavy pan like a cast iron skillet. Its done when I move the wrong way getting these skillets out.

I have Psoriasis and I get it on my scalp really bad at times when I am having a bad flare up. For something like this a good dermatologist would be where to start. Before it started getting all over my head it was just on the hairline on my forehead.

If you are continuing to fall then a consult with another neurologist may be something to consider. Sounds like the one you saw before did not believe in much of anything and that is so frustrating. You deserve to be seen and heard, not blown off.

Take care and keep us posted.
Posted 3/1/2012 2:13 AM (GMT 0)

Thank you stray dog.

 Maybe comming here will just give me the couarge to use my voice , I do have 4 herniated  discs I was in a car accendent in 2004 One neruo doctor told me I was borderline for surgery That was  in 2007, He no longer is on my insurance, So I  thought I would just try to work through it. This doctor I went to  she also is a neurologist, But she specialized in Migrains and Ms, When I first went to her for my migrains I think I only got 3 words in , LOL she evan wrote a small book on migrains that she gave me, I read it and I dont mind that kinda of input, But was not going to go back Because I felt she didnt hear a thing I was saying she is concidered a 5 star doctor,  I tried to tell her about my discs which she has my MRIs of  she said she glanced at them and felt that was not what we should be looking at My husband was like me Uhhhh, When other things started  to change the falling and over all misery  she had all my stuff so I thought I would give her another chance,  But after her eamill, I was again left in the dark, That is how I came to be here, Im so glad I did, straydog what do you do to help with your neck, I made a big mistake and was trying to use My cousins traction machine whoah that didnt feel good ,My job requires standing all day long the only time we are allowed to sit is for our 30 min lunch break,  I really  have thought that these things and the fatigue also brings on my migrains,  Did you do the steriod shots in your disc and if so do you feel they helped? Well I have jabbered enough

Thanks again

Renee

Posted 3/1/2012 6:45 AM (GMT 0)
Hi Renee...

I too wanted to stop in and welcome you to the CP forum. I'm sorry your doctors aren't giving you the care you deserve. The one who said that 'fibromyalgia' is a "cop out" sure does need some education. Most of the research into fibro is being done by major medical universities. I doubt that they're researching a scam. They are trying to find the cause and hopefully better treatment and/or a cure. I've lived with fibro for many years. I wish your doctor who doesn't believe in it could live in my body for one week. Even one day sure would change her mind.

I'm not suggesting that you have fibro or that you don't, just that there are a small minority of doctors who live in the dark ages where some of the newer science and research is concerned. It's like if you can't see it or run a specific test for it then it doesn't exist? I wonder if they believe in electricity....can't see that either...lol smilewinkgrin

Anyway, I'm glad you're here and hope you can get some courage, answers to questions and make some great new friends here.

Hugs,
Chutz
Posted 3/1/2012 8:35 AM (GMT 0)
Renee,

Welcome... I'm glad you found our board, but I am sorry you dealing with so much :(

Kathy, Stray and Chutz gave you great advice.... I "second" everything that they said, lol.

You definitely deserve to be heard, Renee.... and to have a doctor that will help figure out what is going on w/ you... so that you can get the proper treatment. I hope and pray you can find a good doctor that will really help you.

Chutz is right - there is still a small group of doctors that don't believe in fibro... or think it's just a diagnosis given when the "real" thing can't be figured out. When I was first on my journey to figure out my own diagnosis - I ran into a couple of doctors like this. But, as MANY of us here can confirm.... as well as ALL on the fibro board, lol.... it's very, very real. Hopefully, your new rheumatologist will help you figure out if it is fibro... or something else.... or at least point you in the right direction.

It DOES take a lot of courage to really get in there and advocate for yourself... trust me, it was hard for me in the beginning, too. But, after finding the courage and learning that I was the one that was ultimately in charge of my medical care, I was very frustrated that I put up with so much in the beginning....

Let us know how your appointment goes.... take good care.... --Tina
Posted 3/1/2012 8:14 PM (GMT 0)
Hi Renee, I am a little late getting on the board today, I am sort of one that goes in and out all times day or night, lol. You asked me about my neck and to answer your question, no, I have not done epidurals and will not ever do them. The reason is my current PM dr is a retired neurosurgeon who is highly respected in the city where I live. She told me face to face she does not believe there is enough medical evidence to prove epidurals really do work and from what she has seen why put a patient through the pain of having them when they are already in pain and there may be a very good chance they do not work. She said all they are good for is a way for the drs to pad their bills. These are words that came straight out of her mouth. My former PM dr believed in doing them and that is how we got to talking about epidurals to begin with. Another one of my pain mgt drs said the very same thing and he did not have these done on his patients either. Well, thats good enough for me. The injections are something they may or may not work, I want to do procedures they know that will help, not something that is guessed at. They inject a steroid as one of the medications, a dr can write a script for a Medrol Dosepak which is a steroid and many times it helps.

What did work for me was ablation of the nerve endings by radio frequency at the levels where I have problems. This was something I knew I would be able to tolerate having done. I have done physical therapy, massage therapy, traction, trigger point injections that really helped getting the muscle spasms down and acupuncture. These all helped me to a certain extent with the pain. I would like to have some of the money I have spent battling this mess.

I can well sympathize with you on migraines. I have had them for years and passed them on to both of my children. My son is the worst one of the two and he really does struggle with them. Mine always got much worse if I was stressed out over something.

Take care and keep us posted..
Posted 3/2/2012 6:06 AM (GMT 0)

Thank you Chutz, Tina for the Welcome,

 Today was such a long day, I dont know if its just Texas But so many changes in health insurance plans since the begiining of this new year, It effects the Pharmacy,And Makes my Boss pysco which she is that way most of the time anyway LOL,I didnt think I would make it through the day, My ankle is swollen and Im just down right mushed out,LOL I have something funny I was thinking about chutz when you said  you wished  a few doctors could live in your body and feel how it feels , When I was doing treatment for my hepc, I took interferon everyday and ribavirin, Which would cause you to have what they called Riba rage, people kept pushing me to do what I could not do So I told them wouldnt it be funny if for thanksgiving I shot the turkey up with this stuff and served it to them Then they would understand maybe how I felt, Still laughing to this day Thanksgiving comes around and NO one would let me cook dinner They all took me out, Love life!!, I use humor alot its the only thing that keeps me falling off the edge.

     Straydog its just nice to have others to talk to so anytime is a good time for me,I did have trigger shots and was not impressed with those matter of fact on my left shoulder blade its is numb  Im not sure if it is from that or Not, I do believe in Massage therpy I worked for one for 4 years, she worked on me as part of my pay, LOl since I dont work for one It costs alot more,My husband did the shots in his neck why they did I have no idea for what he had it made is much worse and ended up with having his disks replaced anyway, The shots made him worse, The surgery helped alot he can hold his head up again,  But I dont think one is ever the same after surgery, He works for the airlines as a mechanic so he really has a hard time some days, What is ablation of the nerve endings by radio frequency?   I have done physical therapy, Like you I would love to have the money it cost, I also went to a chiropracter, But it bothered me when they tried to pop my back and it does not pop and to me if you have to really force something, it should not be done.

Yes the migraines are a big pain in my life I didnt start having them until My treatament for hep and got worse in 2007 .  Im now taking Midrin , it helps I think you  can take something for to long and it becomes inafective, I have had to watch my blood pressure about 2 and half years ago while at my Doctors appt My blood pressure dropped to 60/45 I was taken to the hospitial and Nothing was ever found out, The Story of my life it seems But now I have to watch my pressure to make sure it doesnt drop to low so I have to be careful when taking migrain meds , So am pleased so far with the Midrin, Stress does bring them on , so does the change in the weather.

Well I hope you have a less pain day on friday,To all t thank you again

always Renee

Posted 3/2/2012 10:18 AM (GMT 0)
Welcome Renee,

I am so sorry for the pain and depression you are having.

I keep trying to fall asleep w/the computer in my lap....so, I will have to check back on you another tiem.

Bles you!
Posted 3/2/2012 5:22 PM (GMT 0)
Hi Renee, I'm a little late, but I just wanted to welcome you here.
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