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My present was Fibro and Chronic Fatigue Syndrome

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Posted 1/1/2010 10:45 AM (GMT -5)
 

First thing is I'm so glad to have found a site that is active and that I can turn to and learn from. I feel that I am not alone. I have been reading all of your stories. We are all in the same boat, we all have hurt the same pain and have felt the same I see. 

On December 22nd I was told by my Internal medicine dr. in Houston, Texas  that I have Fibromyalgia and Chronic Fatigue Syndrome which run hand in hand. I started the Glutathione injections for 6 weeks (just had #2) and I am on Vicadin for pain. 1 every 4 hrs but only during the day. If I can sleep during the night I don't need them. 

 I hope to get off Vicadin when the shots are completed. I know it's bad and I worry about being on any pain med. I have never been on any type of pain medication before but now I have no choice. I learned from reading your logs that Tramadol is good to take, so I will be asking my doctor about that one.

Has anyone taken Glutathione before and what was the next step after that?

Thanks for all your logs and keeping up this site. It helps new people like me

tks,

January   (a silly name because everything I chose was taken...lol)

 

Posted 1/1/2010 2:17 PM (GMT -5)
Hi January. Welcome to the forum. What are the Glutathione shots and what are they supposed to do? I have never heard of them before.

I am sorry that you had to join the forum because you have fibro and cfs, but I am glad you found us.

Sue
Posted 1/1/2010 3:13 PM (GMT -5)
Hi January,
welcome to our Fibro family . sorry though about you having Fibro and CFS. what a pair , and yes they do seem to be a lot of folks with both..
Sorry I have not tried the injections you are talking about. I did a google on it though so I would know what your talking about LOL.. I wish you luck with this Med and pray it helps.
keep in touch and let us know your progress.
I visit quit a few message boards before joining this one.. this one is the most positive one I have found. I think it has lot to do with our Mods. keeping us on track to follow the rules.. as some sites are more for research than support . and support is what I'm looking for .
anyway . take care.. Happy new year Hon,
Fibro huggles.
Posted 1/2/2010 3:23 AM (GMT -5)
HI January, welcome to our fibro family and the forum. I also found this forum at the right time about a year ago, and remain active and grateful for it. I was diagnosed last February so almost a year since my diagnosis after at least a couple years (probably longer) of symptoms.
Posted 1/2/2010 11:59 AM (GMT -5)
Hi January and welcome to the family. We had another member, John, that was also from Texas and I think he was getting the shots and having some success but he hasn't popped in to give us an update for quite awhile.

 

Be sure to read the fibro 101 thread, second on first page, it contains lots of great info.

 

I don't have the time to wonder around the net looking at other forums but we must be the best cause most people end up here with us and we are happy to have each one. smilewinkgrin

 

If you don't mind my asking, what strength of Vicodin do you take??? I have doc app Mon morning and we are going to have a little talk about his greediness when it comes to Vicodin. I am allowed one 5/500 a day which I take in quarters and it's not cutting the pain enough.

 

I know that wasn't much of a Christmas gift but it could be worse.

 

luv and hugs

Marlee

Posted 2/1/2010 2:16 PM (GMT -5)
  Hello everyone and thank you for the welcome.  I thought I would receive an email if anyone made a post but I did not.  I wasn't sure how this all worked, but now I do.    I was on the Vicodin 500mg 1 every 4 hours and that was working great for me. Since Thanksgiving, when I was first diagnosed, I had no pain, no soreness, and no knots. I was concerned with this drug but the dr. kept telling me as long as I didn't abuse it I would be fine. I also checked with my pharmacist and she said you could take up to a certain mg. per day because of the Tylenol in the ingredient. This is what harms your liver; too much Tylenol will harm your liver.  I was well in the clear but still have my concerns and worries, that's just who I am.    After being on Vicodin since Thanksgiving it got to where the pain was coming back more often and I was needed to take it every 3 1/2 hrs and then as the weeks were passing the pain progressed and the muscle's flared up and it was bad again.   I called my dr. and suggested the Trammadol like I had saw some of you on and I have been on that now for a month.  At first it seems to be ok but after the third week the pain to come back more and so did the knots in my arms and the tension in my neck. The dr. sent out a muscle relaxer called Tizanidine 2 mg 2x's a day.  That really didn't seem to work either but I will try anything for a few weeks.   Today is Feb. 1st and I completed my 6 weeks of Clutathione injections. Blood work done and we will see how much it rebuilt the muscles.  I know I will need another round. I still have times that I have loss of my bowl control. Sorry don't mean to be gross but that happens also. When you lose you muscle strength you lose that one also.   The doctor put me back on Vicodin 7.5 mg a strong strength and a strong muscle relaxer called Skelaxin 800 mg.  The lab tech. asked if the dr. was a rheumatologist.  I said no, she is an internal medicine dr.  I have read that most people see rheumatologist for Fibromyalgia and chronic fatigue syndrome and I'm thinking I need to move.     One of my questions to the dr. was "Am I going to have to take pain medication every 4 hours for the rest of my life"? And she said “she was afraid so.”  To me that was the wrong answer.  I think that with fibromyalgia it can be treated with the right med's and then the pain will relieve it's self or I will have to take pain med’s from time to time, not every 4 hrs. for the rest of my life!   Idk…..That is what I'm thinking.  Some of you would know that answer.   When my lab’s are in then we will know how well these Glutathione injections worked and I will pass this along to you.   Well that's how my day went, other that hitting the garbage can cart with a metal handle that broke my tail light on my car when backing out of my drive this morning.   Got to laugh it off and go on!   tks, January Post Edited (January) : 2/1/2010 12:34:36 PM (GMT-7)
Posted 2/1/2010 2:26 PM (GMT -5)
 

Hi Sue,

The Glutathione/ATP: Glutathione is an immune builder and a building block of ATP (adenosine triphosphate), the energy store in every muscle. These shots are the mainstay of treatment for Chronic Fatigue Synfrome, auto-immine, and Fibromyalgia patients.

I just finished a 6 weeks treatment, did labs today and now I wait.  I will post when labs are back but I KNOW I will need another round.  I had lost so much muscle or muscle strenth I'm pretty sure I will need another round due to some of my symptoms of lose of bowl control and weekness in my back. I can't sit or stand very long.  My head felt like it weighted a ton sitting on my neck and that does feel better but the bowl control problems are still there.  When I have to go it just goes, I can't hold it. Sorry for to  much information. lol but I believe we all need to lay it out on this site so we know what we are facing here and can understand everything but this is what is happening. I'm 43 yrs old and never had any health issue's before until now.

tks Sue and I hope this helped answer your question.

January

Posted 2/1/2010 2:37 PM (GMT -5)
Hi, January!  I don't think I welcomed you.  Must not have seen your post so welcome!  If you have fibro, you will have pain.  It doesn't entirely go away.  I've had fibro for 23 years and have had pain for 23 years.  I don't go the narcotic route because it's like your body can become accustomed to it and then you need larger doses.  I know I will have pain and have come to accept that. 

 

I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 supplements to help me control my pain.  I also do gentle exercises (walkikng and swimming) and stretching exercises.  You have to keep moving with fibro or you will be stiff as a board.

 

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good info about fibro, including links about the supplements and also some good gentle stretching exercises that really do help.

 

I use a board certified Internist and am very happey with him.  I have done quite well over the years and have never seen a rheumatologist.  If you have a good rapport and if your doctor believes in fibro, you probably are at a good place.  It sure sounds like it to me.

 

I do hope you are feeling better soon.

 

Sherrine

Posted 2/1/2010 6:32 PM (GMT -5)
January, I have had fibro for 25 years and always had pain. I have tried every NSAID and most narcotic pain relievers there are. None of them have done any good. I read somewhere that the opioid receivers in our brain may not work right, which is why narcotics don't seem to work so well. Good luck in finding something that helps. Diane
Posted 2/1/2010 6:48 PM (GMT -5)
Hi January,

I too have occasional incontinence issues (bladder and bowel). This prompted my neurologist to order MRIs of my brain and spine. Fortunately they were completely normal but the reason he did this was to rule out MS. Have you had any MRIs done? Particularly spinal MRIs because of the bowel issues?

Best wishes....I hope you get some relief soon!
JoAnn
Posted 2/1/2010 6:49 PM (GMT -5)
 

 Hi Sherrine,

 

 The doctor I am seeing believes in giving me narcotics for pain.  That's what concerns me. I started the Vicodin in November and was just given a higher dosage today, Feb. 1st.  I was on Trammadol for a few weeks and it did not work for me.

 Thank you for your post and I will take your advise. I just bought a beginner's level of yoga.

 

thanks everyone for the  warm welcome and I am taking in all your advise.

 

January :)

Posted 2/1/2010 7:51 PM (GMT -5)
 

Hi Joann,

Yes I have had a MRI and found a small cluster of blood vessels in the back left side of the brain. They said that was the problems with my hemipeligic migraines. If i spelled that correctly. It would be a  high risk surgery for a stroke to have those corrected and would be better treated with Topamax on a daily treatment. MS was ruled out at this time but nothing on the spine. I will keep that in mind.

tk you for your post. 

best wishes to all

Jan uary

Posted 3/4/2010 12:04 PM (GMT -5)
I have been collecting links to web sites that detail vitamins, herbs, drugs and other therapies for chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) and fibromyalgia. See here:

http://chronicsorethroat.wordpress.com/site-map/chronic-fatigue-syndrome-research-chronic-fatigue-syndrome/

If anyone knows of other good links to chronic fatigue syndrome treatments, please let me know.
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