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What to expect/do having ME/CFS?

Posted by melissawolfe1981 @melissawolfe1981, Oct 1 8:07am

So after 3 years of seeing doctors, labs/tests being normal, multiple medications to try, I have been diagnosed with ME/CFS & Hemicrania Continua. I knew something was wrong after a few months of being sick & kept pushing for answers. Has anyone else been diagnosed with these? Whether it being one or the other? What things seems to help or make symptoms worse for you?
As of now I’m on Amovig for the migraines/constant head pain & Modafinil for the ME/CFS. I have just recently started taking both of these. The Modafinil has helped to keep me awake all day with a lot of energy….something I haven’t had in 3 years, but again just recently started these medications. Any insight as to what to expect, help or suggestions is greatly appreciated🌻

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John, Volunteer Mentor | @johnbishop | Oct 1 9:19am

@melissawolfe1981, I thought you might like to scan through the discussions and comments on ME/CFS and headaches while you wait for members to respond to your discussion. Here's a link to the search results - https://connect.mayoclinic.org/search/?search=ME%2FCFS+and+headaches. You might also find this video helpful for learning more about the condition:
-- Misunderstood and Misdiagnosed: A New Look at ME/CFS: https://youtu.be/kmrUpXZel9A

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jw9 | @jw9 | Oct 1 3:33pm

@melissawolfe1981
I'm sorry to hear you have been so ill. When I was 31 I became so fatigued (and etc) I lost my career as an RN. This was 1990 and the very beginning of understanding there was an illness, CFS. I had friends in Canada who had treatment and more support, their diagnosis was ME. I'm thinking to tell you that despite your diagnosis, this is a time where it is not considered "all in your head." There are treatments now. Hopefully others will reply that have CFS/ME. I went to a big medical center and they told me to go home and meditate. I told them I'd been mediating for 20 years and then became ill. Within 10 years of living with an illness no one believed in, my bloodwork changed. I had RA, Sjogrens, Hashimotos thyroiditis, Undifferentiated Connective Tissue Disease. All of the autoimmune was in my future after a decade of severe disabling fatigue. I will never know if the two experiences were connected.

Here's my hopeful news about CFS; I became a person with a rich inner life. I became a published poet, creativity was key in my surviving the years of severe fatigue. Your life goes on. It is just not what was expected! I hope you find your inner strength and joy.

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melissawolfe1981 | @melissawolfe1981 | Oct 1 7:29pm
In reply to @jw9 "@melissawolfe1981 I'm sorry to hear you have been so ill. When I was 31 I became..." + (show)
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@melissawolfe1981
I'm sorry to hear you have been so ill. When I was 31 I became so fatigued (and etc) I lost my career as an RN. This was 1990 and the very beginning of understanding there was an illness, CFS. I had friends in Canada who had treatment and more support, their diagnosis was ME. I'm thinking to tell you that despite your diagnosis, this is a time where it is not considered "all in your head." There are treatments now. Hopefully others will reply that have CFS/ME. I went to a big medical center and they told me to go home and meditate. I told them I'd been mediating for 20 years and then became ill. Within 10 years of living with an illness no one believed in, my bloodwork changed. I had RA, Sjogrens, Hashimotos thyroiditis, Undifferentiated Connective Tissue Disease. All of the autoimmune was in my future after a decade of severe disabling fatigue. I will never know if the two experiences were connected.

Here's my hopeful news about CFS; I became a person with a rich inner life. I became a published poet, creativity was key in my surviving the years of severe fatigue. Your life goes on. It is just not what was expected! I hope you find your inner strength and joy.

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@jw9 thank you & I’m so very sorry you had to go through so much too. It has been exhausting to go from living a normal, functioning life to a not so functioning life. I’m thankful for a diagnosis finally & have tried to start embracing & navigating this “new” life which is much slower than what I was before. I can’t believe their suggestion for you was to meditate….Im so sorry. The frustration of finding & receiving help has been insane. Again, thank you for your positive message🌻

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