Ok, FMily, here is an update on this issue. Progress! This may help you, too!
I got in really fast to the Neurologist (she had a cancellation). So lucky! I brought in copies of the abstracts of the journal articles about how a lot of people with FM may actually have Small Fiber Polyneuropathy (SFPN). I expected her not to take me seriously, but she did!
She re-examined my feet & legs and was concerned about the numbness in my feet along with the constant tingling and shocks I get sometimes. (Sound familiar, FMily?) Neuro then scheduled me for an EMG (the "poke and shock" test), which I will have Friday. (UGH!) She wants to rule out Long (Large?) Fiber PN first because if that is an issue we need to identify a cause. Then she said I may have a punch biopsy for SFPN depending on what the EMG shows. S---t, I hope I don't have MS!
She said she had not seen the recent studies about neuropathy and FM, she was glad I brought them in. She seemed to totally buy the idea that FM can be (at least in part and/or for some people) a disease in which the immune system attacks certain nerves. She said the problem is, we don't have a test for the antibody yet like we do for lupus, RA, etc. but we may some day. Cool!
Total validation after so many medical visits involving invalidation!!! Do you hear me on that one, FMily?
I will let you all know how EMG goes, etc. to see if it may be worth others pursuing.
Thanks so much for posting. This has created a great "thread" on the site. I think as moms we are always so focused on our failures and what our limitations are going to do to our children -- whether we are sick or not. And if we ARE sick, it only magnifies this tendency.
I have 2 kids also -- 10 and 7 -- and I actually have the opposite problem. My oldest has been witness through my battles with Major Depression & Anxiety and now Fibro, and now that I am -- for now -- starting to feel a little better, it's my youngest that will benefit from having more of me available for more of her life. My youngest was the one who was there during the "dark years" and will get less "light." What has this done to him? I fear it. It keeps me up at night, honestly.
Some of the best advice I've received about Fibro, illness, disability is focus on what you CAN do and not what you CAN'T. I think this is good advice for mothering/parenting with Fibro, too. I am working on trying to live it.
My mother recently sent out an email entitled "bad news" in which she revealed some sad developments in our family: my stepsister has MS. Now, Mom lives out of the country at the moment, and it's difficult for her to call, so I don't blame her for sticking upsetting info like this in an email message. It's sort of a necessity, unfortunately.
It was entirely horrible the way my stepsister found out she had MS. A *scary* seizure followed by an MRI that found the disease. This was alll totally out of the blue. She has three small children. I feel terrible for her, and I just hope that further testing confirms she has the relapsing-remitting type and that it will be responsive to the newer disease-modifying meds.
Sorry... here is where I start hurting and where it feels shallow to say it, but I felt like responding to my mom, "Did you send out a message entitled 'bad news' to the family when I told you I had been diagnosed with FM?" No, of course she didn't. Nor did she with my brother's CFS. So, why are these situations any different? Why does MS necessitate a family broadcast whereas Fibro and CFS do not?
Well, in fairness, MS can kill you while Fibro and CFS techically can't. I do get that, and I take that very seriously when I consider the possible road ahead for my stepsister. (Whom I love very much, BTW!) But, as I later pointed out to my mom, in what I hope was a moment of greater diplomacy (while still making my point!), if my stepsister does have the relapsing-remitting type and/or has a lot of remission and/or responds well to the newer medicines, she may very well have a better quality of life than a lot of people with FM. (I know, I try to stay away from unproductive "disease/suffering comparing" but I do have an unfortunate need to be taken seriously.)
As much I have gotten "used" to the idea that FM is a real disease, as much as I know it is, as much as I've tried not caring that others don't always treat it as such, I still have my weak moments. It bothers me that others don't treat it as legitimate as other chronic illnesses. I'm not trying to diminish the very real suffering or scariness of MS. Not at all! I am just asking for FM to have the regard it deserves as a majorly life-impacting chronic disease. And even within my own family, there appears to be a hierarchy.
Wish I could be the bigger person here, but for now, I'm not.
I'm with Mary. I think when I go in to the Neuro for Migraines next I am going to ask about getting tested for SFPN. Yes, Mary, I do think it is tested by punch biopsy. Most likely, it will be just one more thing on a looooong list of illnesses I don't have. I am more curious than anything at this point about it. Not letting myself get my hopes up.View Thread
I dont think there have been any specific antibodies identified. This is all just theorizing at present. Yes, like lots of us probably, I've been tested for every autoimmune disorder known to humankind, but none of the tests - RA, lupus, sjogrens -- came back positive
Yes, it's a different study than the nerve shunts. But, if people dianognosed with FM do have some type of nerve pain, whether its truly SFPN or not, if we have "more" nerve shunts than most people but they are malfunctioning or damaged, the impact should be higher on us than the general population?? Basically, I'm saying the findings of these 2 studies may "fit" together for a more comprehensive explanation??
All, has anyone been tested for small fiber polyneuropathy since the study that came out earlier this year stating that roughly half of those in this *small* study who were previously diagnosed with Fibro actually had small fiber polyneuropathy?
I know there was some caution about this study in this Community, wanting to avoid getting our hopes up *yet again* for a cure that won't be forthcoming. Understandable.
Yet, I find this study fascinating! There was an article in USA Today (?) about a woman who has/had Fibro and was dx with SFPN. They were giving her human immunglobin treatments and she said her pain went from 10 to a 4. Now, whether I believe that or not, I don't know. It's the underlying science -- belief that the nerve damage in SFPN is actually auto-immune -- that gets me. The immune system mistakenly attacking nerve cells -- similar to MS and causing the extremity tingling and burning and pain that a lot of us feel -- as well as exercise intolerance. There has been debate for years about whether FM is rheumatologic/autoimmune or neurological or both of the above or none of the above.
The autoimmune nerve damage idea extends to our internal organs -- theory being that our immune systems may attack nerves in our GI tract, for example, as well causing IBS-type symptoms as well as malabsorbption that results in many of us having vitamin deficiencies.
I am not a professional science person but rather a geek with FM that finds this stuff interesting and -- time will tell -- possibly promising.
Sorry I cant post the links right now. as I am on the handheld.