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Has anybody suffered from Fibromyalgia following multiple treatments?

Forums General Melanoma Community Has anybody suffered from Fibromyalgia following multiple treatments?

  • Post
    Theresa123
    Participant

      I have had interferon, biochemo, TIL, and Yervoy.  I am blessed to still be here since I have had unresectable Stage IV melanoma since 2009.  Now they tell me my chronic pain is probably due to fibro.  Has anyone else had this happen?

      I have had interferon, biochemo, TIL, and Yervoy.  I am blessed to still be here since I have had unresectable Stage IV melanoma since 2009.  Now they tell me my chronic pain is probably due to fibro.  Has anyone else had this happen?

    Viewing 5 reply threads
    • Replies
        MaryD
        Participant

          Oh yes – I sure have and thought I was the only one!  I actually was diagnosed with fibromyalgia over 20 years ago but it was well under control and I barely thought about it.

          In 2001 I was DX with melanoma (all my recurrences were resectable) and over the years did one year of Interferon, a vaccine clinical trial, radiation, Ipi, and a 6 month course of pulsed IL-2.   The great news is that I have been NED for 4 1/2 years now (thank God every day!) – the bad is that the pulsed IL-2 caused an ongoing bad flare of fibromyalgia which I'm still fighting.   I did tons of research and found that there is documentation that cytokine therapy can trigger or aggravate it.

          Given all the treatments you did , I don't doubt that is was has caused the fibromyalia.  If you're like me, no doubt you've tried a lot of meds and in fact I'm just getting ready to try Topomax.   It really is a difficult condition to manage because it tends to wax and wane – and is unpredictable.    I do hope though that your melanoma is under control and that you are doing well otherwise.

          Know that you're not alone with either of those situations!

          Mary

           

           

          MaryD
          Participant

            Oh yes – I sure have and thought I was the only one!  I actually was diagnosed with fibromyalgia over 20 years ago but it was well under control and I barely thought about it.

            In 2001 I was DX with melanoma (all my recurrences were resectable) and over the years did one year of Interferon, a vaccine clinical trial, radiation, Ipi, and a 6 month course of pulsed IL-2.   The great news is that I have been NED for 4 1/2 years now (thank God every day!) – the bad is that the pulsed IL-2 caused an ongoing bad flare of fibromyalgia which I'm still fighting.   I did tons of research and found that there is documentation that cytokine therapy can trigger or aggravate it.

            Given all the treatments you did , I don't doubt that is was has caused the fibromyalia.  If you're like me, no doubt you've tried a lot of meds and in fact I'm just getting ready to try Topomax.   It really is a difficult condition to manage because it tends to wax and wane – and is unpredictable.    I do hope though that your melanoma is under control and that you are doing well otherwise.

            Know that you're not alone with either of those situations!

            Mary

             

             

              Theresa123
              Participant

                Thank you so much for your answer!!  The Doctor is putting me on Norpramine.  I have been in a lot of pain lately.  The IL-2  info was interesting since I have been on it so much. 

                I am under control with my mel.  I think. 

                take care!!!

                Theresa123
                Participant

                  Thank you so much for your answer!!  The Doctor is putting me on Norpramine.  I have been in a lot of pain lately.  The IL-2  info was interesting since I have been on it so much. 

                  I am under control with my mel.  I think. 

                  take care!!!

                  Theresa123
                  Participant

                    Thank you so much for your answer!!  The Doctor is putting me on Norpramine.  I have been in a lot of pain lately.  The IL-2  info was interesting since I have been on it so much. 

                    I am under control with my mel.  I think. 

                    take care!!!

                  MaryD
                  Participant

                    Oh yes – I sure have and thought I was the only one!  I actually was diagnosed with fibromyalgia over 20 years ago but it was well under control and I barely thought about it.

                    In 2001 I was DX with melanoma (all my recurrences were resectable) and over the years did one year of Interferon, a vaccine clinical trial, radiation, Ipi, and a 6 month course of pulsed IL-2.   The great news is that I have been NED for 4 1/2 years now (thank God every day!) – the bad is that the pulsed IL-2 caused an ongoing bad flare of fibromyalgia which I'm still fighting.   I did tons of research and found that there is documentation that cytokine therapy can trigger or aggravate it.

                    Given all the treatments you did , I don't doubt that is was has caused the fibromyalia.  If you're like me, no doubt you've tried a lot of meds and in fact I'm just getting ready to try Topomax.   It really is a difficult condition to manage because it tends to wax and wane – and is unpredictable.    I do hope though that your melanoma is under control and that you are doing well otherwise.

                    Know that you're not alone with either of those situations!

                    Mary

                     

                     

                    Colleen66
                    Participant

                      Hi Guys.

                      I have a thought for you to consider.  Fibromyalgia seems to be a catchall for inflammation, achy joints, brain fog, stomach issues and such.  Kinda of like the IBS umbrella.  

                      I don't know if you have ever heard of celiac disease but it is an autoimmune disease.  It can start at any point of life.  It can be genetic or start after a sickness, pregnancy,  any traumatic event.  Some people can have digestive issues while others don't.  If can effect any part of the body or most parts.  

                      Celiac disease, like melanoma, is not curable but Celiac can be easily controlled.  A gluten free diet is all it takes.  In celiac, the gluten grains start the reaction and things go haywire from there.  

                      People with Diabetes and Autism can also benefit from this diet, there are on-going studies in this area.

                      A gluten free diet is easy to follow.  Three grains you can't have are wheat, barley and rye.  The easiest way do do this is to shop the perimeter of the store.  Fresh foods, etc.  Stay away from processed foods and dont try to substitute gluten free food for the regular version with the exception of bread and pasta.  Gluten free processed food inherently has more sugar.  

                      If you want to try it, give it a full month to eat gluten free and see if some symptoms are fading, that will tell you whether gluten has become an issue for you or not.  Also make sure your thyroid is functioning correctly as it usually goes hand in hand with celiac and other autoimmune diseases.

                      If you would like more information, shoot me a message.

                      Best of luck,

                      Colleen 

                      Colleen66
                      Participant

                        Hi Guys.

                        I have a thought for you to consider.  Fibromyalgia seems to be a catchall for inflammation, achy joints, brain fog, stomach issues and such.  Kinda of like the IBS umbrella.  

                        I don't know if you have ever heard of celiac disease but it is an autoimmune disease.  It can start at any point of life.  It can be genetic or start after a sickness, pregnancy,  any traumatic event.  Some people can have digestive issues while others don't.  If can effect any part of the body or most parts.  

                        Celiac disease, like melanoma, is not curable but Celiac can be easily controlled.  A gluten free diet is all it takes.  In celiac, the gluten grains start the reaction and things go haywire from there.  

                        People with Diabetes and Autism can also benefit from this diet, there are on-going studies in this area.

                        A gluten free diet is easy to follow.  Three grains you can't have are wheat, barley and rye.  The easiest way do do this is to shop the perimeter of the store.  Fresh foods, etc.  Stay away from processed foods and dont try to substitute gluten free food for the regular version with the exception of bread and pasta.  Gluten free processed food inherently has more sugar.  

                        If you want to try it, give it a full month to eat gluten free and see if some symptoms are fading, that will tell you whether gluten has become an issue for you or not.  Also make sure your thyroid is functioning correctly as it usually goes hand in hand with celiac and other autoimmune diseases.

                        If you would like more information, shoot me a message.

                        Best of luck,

                        Colleen 

                          Theresa123
                          Participant

                            Thanks for the info, Colleen!!

                            Theresa123
                            Participant

                              Thanks for the info, Colleen!!

                              Theresa123
                              Participant

                                Thanks for the info, Colleen!!

                              Colleen66
                              Participant

                                Hi Guys.

                                I have a thought for you to consider.  Fibromyalgia seems to be a catchall for inflammation, achy joints, brain fog, stomach issues and such.  Kinda of like the IBS umbrella.  

                                I don't know if you have ever heard of celiac disease but it is an autoimmune disease.  It can start at any point of life.  It can be genetic or start after a sickness, pregnancy,  any traumatic event.  Some people can have digestive issues while others don't.  If can effect any part of the body or most parts.  

                                Celiac disease, like melanoma, is not curable but Celiac can be easily controlled.  A gluten free diet is all it takes.  In celiac, the gluten grains start the reaction and things go haywire from there.  

                                People with Diabetes and Autism can also benefit from this diet, there are on-going studies in this area.

                                A gluten free diet is easy to follow.  Three grains you can't have are wheat, barley and rye.  The easiest way do do this is to shop the perimeter of the store.  Fresh foods, etc.  Stay away from processed foods and dont try to substitute gluten free food for the regular version with the exception of bread and pasta.  Gluten free processed food inherently has more sugar.  

                                If you want to try it, give it a full month to eat gluten free and see if some symptoms are fading, that will tell you whether gluten has become an issue for you or not.  Also make sure your thyroid is functioning correctly as it usually goes hand in hand with celiac and other autoimmune diseases.

                                If you would like more information, shoot me a message.

                                Best of luck,

                                Colleen 

                            Viewing 5 reply threads
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