Wasting muscle

[Dieselfive]

I also have wasting muscle in my hands, forearms and feet. I have so many other symptoms as well pain, vertigo, muscle weakness, fatigue (omg fatigue) muscle twitches, muscle spasms, loss of temperature control, loss of balance, sleep deprivation, and the list goes on. I’m mostly concerned about the washing muscles, temperature control and the pain. I don’t know what to do as my hands waste away they look like skeleton hands almost. I don’t know if this is a symptom of FND?

[Lady4]

Sorry to hear that your dealing with so much, have you been prescribed any medication throughout this journey as it sounds like you have had to deal with this for a while, hopefully you have a medical team (and family) supporting you.

[Dieselfive in reply to Lady4]

Thank you for your support I have been prescribed nothing for any of my symptoms. It’s been an uphill struggle I do not yet have a medical team however I do have family that keeps me going for sure. 😁

[Lady4 in reply to Dieselfive]

Can I ask are you able to exercise, move your hands, firearms and feet because you often here of people that have muscle loss due to non usage, just a thought. I guess if it causes you pain movement would be more challenging but tiny steps may help.

[whirlygirl16]

Hi DiselfiveI have all of those things as well. I was diagnosed with fnd bank in 2020. I'm being sent back to see a neurologist again. I see him in a few weeks , just after Christmas. But I'm guessing it's probably fnd again causing these things. I,ll let you know what he says, as to whether they are fnd or something else.

[Dieselfive in reply to whirlygirl16]

Thank you for your support and definitely let me know I appreciate that so much! 😁

[whirlygirl16 in reply to Dieselfive]

You are very welcome 😃 I will definitely let you know. keep strong and chat again soon

[Batty1]

You should have a complete thyroid panel with antibodies…. Graves’ disease

[Dieselfive in reply to Batty1]

Thank you I will definitely ask for that! 😁

[210272]

Dieselfive, that's a lot to be dealing with so I really feel for you. Agree re thyroid panel and I'd also ask for bloods to check your vitamin (particularly Vit D) and mineral (particularly magnesium) levels. Don't let them fob you off with 'low but within normal range' since 30 - 40 years ago levels were very different because more of us were able to spend more time outside and had a better diet.

It's often easy to assume that all symptoms stem from one condition (eg FND) but new symptoms - or symptoms that are not improving with treatment - should be investigated to avoid any diagnostic overshadowing, which can be a big problem for people with a FND dx.

[Dieselfive in reply to 210272]

Thank you I will be asking for that as well. I have not been treated for any symptoms as I have not yet been to a doctor that deals with FND and no one seems to know this common rear diagnosis 😁

[Numma100]

Hello Dieselfive

I can sadly relate to almost all your listed issues as well (and the list goes on) Myself & My doctors all consider me a very healthy "30" something especially my neurologist/therapist who has watched my conditions fluctuate since around 2018, I have most of my "FND" issues in a much better place today but visit them all far too often still.. As far as Muscle being wasted/muscular atrophy this is something I still greatly experience, it was so bad at the start before my diagnoses and control of my movements I felt like I was "wasting away" I now workout 4-5x week and have a fairly decent muscle tone and have no issues lifting at the gym, yet.. I still feel weak in my bones and skeleton like as well in my hands, I still feel the loss of sensation just as I felt when I was home dealing with the worst of the symptoms. I had thought my lack of being able to work, and function & FND symptoms were not the only cause I thought lack of being active during 2018-2021 was the real issue (due to my increasing FND issues) but I have proved that even being very active still lingers the same muscle atrophy issues in my hands, shins, ankles, feet & calves. I know it is so much to deal with and even just talking about it brings up issues for myself. Lastly I frequently get blood panels and had a VIT D issue but no longer have any defecencies. Having a good circle of doctors is certainly a great way to reel in some issues and focus on them one at a time. Best of luck ☺️

[Dieselfive in reply to Numma100]

Thank you I’m so happy I joined it’s been amazing just to know that I’m not alone but I can actually hear from all of you what you have done. I’m very grateful 😁

[Corgi_Gal in reply to Numma100]

Have you ever had genetic testing for neuromuscular disease like Charcot Marie Tooth? What you are describing sounds exactly like CMT. It is the most common genetic neuromuscular condition after MS and yet very few doctors test for it. There are literally 100's of genetic mutations that cause CMT and it's a very easy blood test now. I got mine tested by going through a company called Invitae. The genetic counselor was very nice, took my symptoms seriously and ordered the genetic panel same day. I got my results within two weeks. Turns out I do have a mutation associated with CMT type 2A. I hadn't yet been diagnosed with FMD, yet, but I could tell it was heading that way. Unfortunately, no treatment for CMT, just management. But now I can tell any doctor who tries to pin my issues on FMD to suck it. And I now have a reason for why I feel the way I do. Which helps my mental health immensely.

I would also try to get autoimmune testing done. There are labs that you can order directly from. I also recently found out I have autoantibodies that cause nuero issues including all the constant cramping and twitching I've been dealing with for six months. Any my ANA test was a relatively high positive so now I am seeing a rheumatologist to try to find out why.

All this to say, ADVOCATE for yourself. Get testing on your own if necessary. Do not let them slap a FND diagnosis on you out of laziness or discrimination.

[ChronicJazzHands]

If it's truly wasting muscle, then you need to be checked for other conditions. FND does not directly cause that. FND can make exercising harder, and then cause that, but you may have something else along side FND.