Anyone With Fibromyalgia?

I think my complications are largely due to having fibromyalgia. Anyone else?

On 5/15/2008 NOBUTTERFLY wrote:

I think my complications are largely due to having fibromyalgia. Anyone else?

I have fibromyalgia.  It started years ago as Myofacial Syndrome; a form of Fibromyalgia.  It attacks the muscles only in the neck up the back of your head, upper chest and arms.  I was actually having weekly massages before my TT to control the pain.  My dr had just diagnosed me with Fibromyalgia when my thyroid cancer hit.  Believe it or not, the opposite has happened to me.  Ever since my TT, I have had zero pain from the fibromyalgia and I had no side effects to any stage of the game except my taste buds.  Go figure.....but I hope it continues!!!!

On 5/15/2008 dinparadise wrote:

 

On 5/15/2008 NOBUTTERFLY wrote:

I think my complications are largely due to having fibromyalgia. Anyone else?

I have fibromyalgia.  It started years ago as Myofacial Syndrome; a form of Fibromyalgia.  It attacks the muscles only in the neck up the back of your head, upper chest and arms.  I was actually having weekly massages before my TT to control the pain.  My dr had just diagnosed me with Fibromyalgia when my thyroid cancer hit.  Believe it or not, the opposite has happened to me.  Ever since my TT, I have had zero pain from the fibromyalgia and I had no side effects to any stage of the game except my taste buds.  Go figure.....but I hope it continues!!!!

Could it have been the cancer was causing your neck pain?

I have not been diagnosed with fibromyalgia, but I also had severe neck and shoulder pain before my TT.  Much, much less since.

On 5/16/2008 Skylark wrote:

 

On 5/15/2008 dinparadise wrote:

 

On 5/15/2008 NOBUTTERFLY wrote:

I think my complications are largely due to having fibromyalgia. Anyone else?

I have fibromyalgia.  It started years ago as Myofacial Syndrome; a form of Fibromyalgia.  It attacks the muscles only in the neck up the back of your head, upper chest and arms.  I was actually having weekly massages before my TT to control the pain.  My dr had just diagnosed me with Fibromyalgia when my thyroid cancer hit.  Believe it or not, the opposite has happened to me.  Ever since my TT, I have had zero pain from the fibromyalgia and I had no side effects to any stage of the game except my taste buds.  Go figure.....but I hope it continues!!!!

Could it have been the cancer was causing your neck pain?

I have not been diagnosed with fibromyalgia, but I also had severe neck and shoulder pain before my TT.  Much, much less since.

 

I too have fibromyalgia.  I didn't have pain prior to my TT, but after i started with alot of pain in my neck, front and back, and also my back shoulder areas and down my spine.  this has been going on since 2006.  January of 2008 i finally couldn't handle it and i started going back to the dr.'s.  One finally diagnosed it as febromyalgia and i am now on 75 mg twice daily of Lyrica.  It has helped greatly, except until just the past few weeks.  My oncologist just decided yesterday that it is time for another scan.  My WBC is up over 10,000 and he is thinking possibility lymph nodes might be raising their ugly head with cancer.  That all starts next month.  I think the after affects of the cancer is almost worse than it by itself.

j

I have been diagnosed with Fibromyalgia over the past two years, when the medications were not working, I continued to see different Rheumatologists who were unable to make any decisions about treatment, then finally they found the thyroid cancer, and all now agree that all my pains etc. may very well be caused from the cancer.

I just had a tt, with one removal of parathyroid glad, about 1 week ago, an am now feeling the effects of low calcium absorp.  I say, keep going to different dr.s for 2, 3 and 4 opinions if you need to. It doesn't hurt!

On 5/18/2008 georgetwo wrote:

I have been diagnosed with Fibromyalgia over the past two years, when the medications were not working, I continued to see different Rheumatologists who were unable to make any decisions about treatment, then finally they found the thyroid cancer, and all now agree that all my pains etc. may very well be caused from the cancer.

I just had a tt, with one removal of parathyroid glad, about 1 week ago, an am now feeling the effects of low calcium absorp.  I say, keep going to different dr.s for 2, 3 and 4 opinions if you need to. It doesn't hurt!

Hi, I can relate to what you are saying. I felt like a hypocondriac for years going from doc to doc. Now come to find out that I was yo-yoing between hypo and hyper all ths time. I honestly think that the cancer was somehow a result or reaction to a weakend immune system especially since mine started out as Autoimmune Thyroiditis. I always had a "normal" TSH but my uptake was abnormal as long as 5 years ago. All they went by was the TSH though. It has been frustrating. As yourself I has TT a month ago 1 Parathyroid.  I have Multifocul Papillary cancer 4 tumors. The Dr. did a resection  lymph nodes thinking it had spread. (they biobspsied some of them and found no spread)  I am hoping that my  WBC is clear after my RAI next month.

CALCUIM CALCIUM, I ended up in the ER a couple of week after my TT because my caclium got so low. The doc might tell you that it is rare that you shouldn't  have calium problems that long after surgery.  IT IS NOT RARE ESPECIALLY IF THEY REMOVED ANY PARATHYROIDS. Your calcuim can get messed up for days, months, years or even forever. The Parathyroids control and moniter your calium levels in your body. During surgery they can go into "shock" and not work very well or simply not work at all. The problem usually resolves itself with oral Tums. If you are having symptoms, Tingling- hands, feet, twitching around mouth, face eyes, dizzines, disoriented, twitching muscles like after running even in your back and arms. Call your doc ASAP you probably need IV Calcium.  If your symptoms are mild go and get a blood test to check your calcuim levels. If they catch it before it gets bad your doc can put you on Citrical (calcuim citrate) and Calcitriaol (Rx Vitamin D only $4 at Wal-mart). I am on 3,200 mg down from 4,800 and 50mcg Calcitriol twice a day. It's been two weeks and I do feel better. Another thing I had to do was cut my Cytomel from 50mcg per day to 25 I went Hyperthyroid within about 5 days of being on it. Whewww.. I don't feel great but better!  I have found that the more educated and infomed I become about this and the more people I communicate with makes it so I don't feel so all alone and it becomes a little easier to deal with.

About the Fibromyalgia too, Mine has actually gotten worse, not aroung the neck and shoulder area. That is about the same. My arms, back, knees, legs,  and heels seem much more sore. Oh well still more to go. I hope anyone going through this to have a more comfortable and enjoyable rest if the summer when we are done the our RAI and WBC"S.

What thyroid meds are you on?  Check the side effects on the internet.  I felt like a dead person walking while on some of the synthetic ones - so I started doing my own research on the internet - after I saw the side effects I saw that the problem was the meds not another disease.  When I started taking Armour all my symtoms disappeared,  The doctors did not help me with this at first and instead wanted to give me other drugs - my own research and determination to feel better made me push for different thyroid meds - now I feel great!  Perhaps checking some other alternative meds can help you too.  Good luck. 

On 5/19/2008 NOBUTTERFLY wrote:

 

On 5/18/2008 georgetwo wrote:

I have been diagnosed with Fibromyalgia over the past two years, when the medications were not working, I continued to see different Rheumatologists who were unable to make any decisions about treatment, then finally they found the thyroid cancer, and all now agree that all my pains etc. may very well be caused from the cancer.

I just had a tt, with one removal of parathyroid glad, about 1 week ago, an am now feeling the effects of low calcium absorp.  I say, keep going to different dr.s for 2, 3 and 4 opinions if you need to. It doesn't hurt!

Hi, I can relate to what you are saying. I felt like a hypocondriac for years going from doc to doc. Now come to find out that I was yo-yoing between hypo and hyper all ths time. I honestly think that the cancer was somehow a result or reaction to a weakend immune system especially since mine started out as Autoimmune Thyroiditis. I always had a "normal" TSH but my uptake was abnormal as long as 5 years ago. All they went by was the TSH though. It has been frustrating. As yourself I has TT a month ago 1 Parathyroid.  I have Multifocul Papillary cancer 4 tumors. The Dr. did a resection  lymph nodes thinking it had spread. (they biobspsied some of them and found no spread)  I am hoping that my  WBC is clear after my RAI next month.

CALCUIM CALCIUM, I ended up in the ER a couple of week after my TT because my caclium got so low. The doc might tell you that it is rare that you shouldn't  have calium problems that long after surgery.  IT IS NOT RARE ESPECIALLY IF THEY REMOVED ANY PARATHYROIDS. Your calcuim can get messed up for days, months, years or even forever. The Parathyroids control and moniter your calium levels in your body. During surgery they can go into "shock" and not work very well or simply not work at all. The problem usually resolves itself with oral Tums. If you are having symptoms, Tingling- hands, feet, twitching around mouth, face eyes, dizzines, disoriented, twitching muscles like after running even in your back and arms. Call your doc ASAP you probably need IV Calcium.  If your symptoms are mild go and get a blood test to check your calcuim levels. If they catch it before it gets bad your doc can put you on Citrical (calcuim citrate) and Calcitriaol (Rx Vitamin D only $4 at Wal-mart). I am on 3,200 mg down from 4,800 and 50mcg Calcitriol twice a day. It's been two weeks and I do feel better. Another thing I had to do was cut my Cytomel from 50mcg per day to 25 I went Hyperthyroid within about 5 days of being on it. Whewww.. I don't feel great but better!  I have found that the more educated and infomed I become about this and the more people I communicate with makes it so I don't feel so all alone and it becomes a little easier to deal with.

About the Fibromyalgia too, Mine has actually gotten worse, not aroung the neck and shoulder area. That is about the same. My arms, back, knees, legs,  and heels seem much more sore. Oh well still more to go. I hope anyone going through this to have a more comfortable and enjoyable rest if the summer when we are done the our RAI and WBC"S.

wow, I think we may be twins in another life. What you have explained is me in a nutshell. I just received the pathology report and also had 3 large tumors on the left and one on the right, He said that some neck tissue had been affected, and 3 of the 11 lymph nodes had the cancer too.  It is the same type, papillary, multifocal. I hope it is treated well by the RAI, he is recommending the RAI 131 treatment that will happen on June 27th followed by the WBS 10-12 days later. It seems like a while from now, but actually it will be 7 weeks from the surgery date.  He also gave me the LID to follow for the 2 weeks prior. I did have to take a trip to the ER last night because of the calc. levels dropping so low. My entire face, neck, hands and feet are extremely affected. After 7000 mg of calcium, 2000 vitamin D, 3 Calcitroil pills, and over 50 tums, I finally decided to go to the ER.  They gave me an injection of Ativan to relax me, and sent me home (thanks!!)

So today I saw the endocrinologist, and he changed the dose of the calcitroil and checked the blood and I know he will keep following me closely. It is nice to find a great Dr. to get you through this.  he actually said " Call me day or night!"  When do you hear that anymore from a doctor.

My fibro pains were so bad over the the past two years, and especially just a few months prior to the cancer detection, I had so much pain in my feet, knees and hips that It was hard to get up and try to take 10 steps, let alone try to climb the stairs in the house. so I am praying really hard that maybe those symptoms will disappear once all the treatment is done. also the fatigue from the pains etc is enough to make you want to crawl under the blankets and say forget today and lets try again tomorrow.  But with the cancer detection, I have noticed that I have been stronger emotionally and have no desire to crawl under anything, like you said, the more knowledge you have, makes everything else go a bit smoother.  

Keep me posted on your progress as the weeks come.  and To ALL: God Bless and keep positive!

On 5/19/2008 KathyMMM wrote:

What thyroid meds are you on?  Check the side effects on the internet.  I felt like a dead person walking while on some of the synthetic ones - so I started doing my own research on the internet - after I saw the side effects I saw that the problem was the meds not another disease.  When I started taking Armour all my symtoms disappeared,  The doctors did not help me with this at first and instead wanted to give me other drugs - my own research and determination to feel better made me push for different thyroid meds - now I feel great!  Perhaps checking some other alternative meds can help you too.  Good luck. 

Hi, 5 years ago when they diagnosed me with the multi nodular goiter/autoimmune Thyroiditis ( Hashimotos). I  never recieved any treatment until after my TT for the mulitfocul Papillary cancer. First Levoxothyrine and now Cytomel until I go Hypo next week for the RAI. I just found out my Endo is no longer practicing via a very short letter in the mail. I guess that is why my calls weren't returned and why my surgeon keeps telling me that he is the only one that really needs to follow me unti after the RAI.  I did feel better today and yesterday after cutting my Cytomel in 1/2. I am going to look into the Armor that i have heard so much about on this forum and online. I had never even heard of it until nowl. Thanks for  your support.