Fnd - circulation problems

[lorettapalmer]

I have functional gait disorder and have a range of problems for over 5 years now with mostly unable to walk far, and back pain if I walk too far. But my hands have lately started to go very cold at the tips of my hands worse on one hand than the other. I have no feeling from my chin down but the coldness is new, does anyone else get this? Does it sound familiar?

[Tewa]

Yes, my right hand and right leg are colder on that side. I also have crawling, chilling, tingling cold on right leg. Stiffness in all limbs too.

This is very uncomfortable along with all of the rest of the symptoms that go along with this.

[lorettapalmer in reply to Tewa]

Thank you Tewa, have you found it is worse when you get cold or when you are tired? Or not at all?

[Tewa in reply to lorettapalmer]

Yes, much worse when tired, cold and at night. My whole right leg feels like chills are running up and down. Crawly sensations of cold too. My hands stay cold most of the time. Right hand is colder than left. Feet too. Also the heat and humidity in Virginia exacerbates all symptoms.

[lorettapalmer in reply to Tewa]

I'm in the uk, and your the only person I have found with the same problems as me. It's really cold here the last few days and I'm really suffering again. My hands are terrible and I often drop things. How have u had Fnd?

[Tewa]

Hi Loretta

I was diagnosed with FND, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome in this past January after over 6 years of seeking an answer. I was given a diagnosis of MS in 2010, then not, a diagnosis of Myasthenia Gravis in 2014, then not.....Several docs attributed my symptoms/illness to psychological factors. I was evaluated by a psychologist, three therapists, and a psychiatrist. All wrote..this is not a psychological manifestation. Still, there were docs who did not give any validity to those opinions. Urologist, Ophthalmologist reports also confirmed a neurological disorder. There was no team work among the various professionals. Especially with the neurologist who did not confer with the other professionals.

I have periods where I drop things or have spasms in my hand/arms and knock things over. About 4 years ago my right hand showed visible muscle atrophy. It started in my left hand about 2 years ago. My right upper arm is smaller than my left, also my right calf. I am right hand dominant, have started about 2 years ago,using my left hand more. So, I use both hands. Don't want my right hand to have non-use and maybe more atrophy. I am an artist and also a writer. This has impacted on my ability to be creative. The extreme fatigue/weakness is a major impediment to my ability to be creative. When I can paint/draw the use of my muscles then increases the pain level, and sometimes the next day I cannot use my right arm at all. I also have loss of manual dexterity in both hands, as my fingers feel numb, cold and clumsy.

Seems the impact of this disorder on all systems and functioning, limits, changes what could be possible before into something very different. The last 2 month, I have experienced more progression of all symptoms, leading to more isolation. I have had to limit my activities outside my home, due to sensory overload from too much stimulation , with noises, lights, too much going on around me. This can lead to a crash.......where all symptoms exacerbate to the pint of feeling so awful/weak/fatigued/headache intensifies/nausea...all of it... I am having to say no to activities I loved.

I so understand your challenges, frustrations and how life changes with this disorder. I am again grieving since the recent progression. Trying my best to accept what has passed and make the present life with the limitations, the best it can be. I am not successful with this every day.

Sending you support and wishes for help.

[lorettapalmer in reply to Tewa]

Thank you again Tewa, my story starts when I lost the feeling in one leg and then the other over night and showly the feeling has gone up to my chin. I lost our first little boy 11 years ago and they think that I didn't grieve long enough before getting pregnant again. We had fertility treatment to get me pregnant as I have poly cystic overies and the cystic grow back quickly so we were told that I had 6 months to get pregnant. Anyway, all of this and the stress of work built up and caused Fnd! Through the years I have had neurophiso, neuropsychology and CBT courses plus, neurology and urology all are still helping me, but I still feel really alone. Living with this, and the day to day routine life is still strange. My husband and son Jacob are wonderful, Jacob has now known me being poorly for half of his child life!

The circulation problem is just a new problem that I'm worried about and so glad that I've found you to stop me worrying, thank you again, dear friend xx

[Tewa]

Loretta,

Sorry to say that I have found that new symptoms can come as this disorder progresses. Maybe helpful to read the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ..name now updated to Systemic Exertion Intolerance Disease. Will say it can be a bit daunting to read about this as the symptoms are many, varied and concerning.

So sorry for your loss 11 years ago. That pain is carried within for a long time, before it can be bearable. My heart goes out to you and your husband. You have explored many treatments and therapies to facilitate healing.

You also mentioned urology. I have the problems that require follow-up by a urologist. I cannot do pelvic floor exercises as any attempts on my part exacerbate the problems.

Having this disorder changes all in life, including friendships. Friends feel helpless, and with no clear diagnosis for a long time, even a diagnosis of FND, or CFS or ME, something they have never heard of, with no significant treatments, leaves them at a loss. I have had close friends tell me, try harder, have more faith, push past this with exercise, Physical therapy, etc etc etc....the message being...you are the problem, you mustn't really want to get well. And these friends are spiritually aware, the teachings give the message "we can heal ourselves!" I find it exhausting to give the explanations as to why I cannot exercise, do PT, push and push, do more!

It seems very clear to me, that with all of the toxins we are exposed to in our environment, our STRESSED immune systems can be impacted in with a crash, FND, CFS, ME, affecting the brain and Central Nervous System functioning. What we may have been able to process before, now has a serious impact on our bodies. The research I have done is supporting this. From a virus, a surgery, exposure to a chemical neuro-toxin, accident, childbirth, etc, is now casing serious illness.

.

Happy that you have your wonderful husband and son. Also hear that you so wish you were healthier. To balance out your concerns...and not in any way to disregard or diminish them, it may be helpful to keep in mind what your son, and husband maybe learning from this experience. Tolerance, compassion, patience, awareness for the sufferings of others, the human experience in life, which as we well know, can change out life, health, circumstances very quickly and dramatically.

Do the best each day, be ind and gentle with self and also pro-active, speaking up with drs. I am happy to be of support in any way I can.

Blessings.