Dear Network,

Over the past year, my husband has unfortunately become considerably more fatigued without any other changes in connection with the disease or the IVIG treatment he receives. 

I would therefore like to know if there are others who experience general fatigue or rapid exhaustion in connection with physical activity, without this being related to possible neuropathic pain?

Many thanks in advance for answers and for all other important information that this network provides insight into.

Best wishes for a happy new year to all

Kristine

Hi Kristine, 

My husband sometimes needs more rest after infusions, but isn't as fatigued as your husband seems to be. He's had SCLS for about 11 years, diagnosed and getting infusions for 6 years.
 

There are many other health issues that cause fatigue, some of them debilitating, such as myalgic encephalomyalitis/chronic fatigue syndrome (ME/CFS), long Covid, multiple sclerosis, some cancers. 
 

I wonder if it's warranted to see his doctor to rule out other serious things? 

A word of warning about ME/CFS and long Covid: most doctors aren't versed in these illnesses. If his bloodwork comes back "normal" you can be glad many things have been ruled out. But if as a result your doctor says nothing is wrong and dismisses you, there are some resources for these mysterious and misunderstood diseases.

Our son has been suffering with ME/CFS for 20 years and we know all too well. I recommend starting with https://www.omf.ngo/ and https://solvecfs.org/

Hope this helps Kristine,

Rebekah

Hi,

I have been diagnosed for going on 18 years. I have had to go to having my IVig therapy every two weeks and I do experience fatigue. I do have reactions to the IVIg which poses its own set of problem. I wish your husband well and hope you find something to help with his fatigue. As my disease has progressed, my life has gotten much smaller just remind him that he can reinvent himself and find ways to take advantage of his energy level.

Dear Rita and Rebekah, Thank you both for your answers and good advice, which will be included in the discussion at the next doctor's consultation. Completely agree that SCLS and possibly results create a complex picture, which unfortunately does not exclude that other things come into play. You, Rita, have a very good point that one can get far with good choices and (hard) priorities, too. Many thanks again, it really means a lot to us that we can share our common precious experiences here. 

Best wishes from Kristine