compression stocking issues

[Kessey]

When I wear my compression stockings(thigh high) my feet feel like blocks of ice. But lately my left foot also hurts really bad like the muscle from my big toe to my ankle is tearing, sudden burning pain. It is slightly better when I don't wear them, but much worse when I point my toes(like when I put on pants). Is this a problem with the stockings or just more neuropathy? I have many herniated disks in my lumbar spine from frequent falls with the syncope, could it be that? I'm at the point were I can't take one more thing going wrong, need help!!

[Heiferly]

Sorry if I created any confusion about specialists. The two types of specialists that *usually* are sought as diagnosticians or treatment specialists for Dysautonomia are either neurologists or a type of cardiology sub-specialist called an electrophysiologist, or EP-cardiologist. (A very, very rare sub-specialty is autonomic neurology, and these specialists are located almost exclusively at the major autonomic hospital clinics.)

A neuromuscular specialist is a different sub-specialty of neurology that deals with tests such as EMG and nerve conduction studies, and treats conditions which may range from hereditary neuropathies to diabetic neuropathies to multiple sclerosis to muscular dystrophy and many more. Patients may see a neuromuscular specialist to diagnose neuropathy, evaluate the underlying cause of known neuropathy, or for ongoing monitoring of the condition--which is why I mentioned the specialty above.

As a sidenote, some patients with dysautonomia work to have a streamlined approach, with a minimal number of specialists involved; others may opt to see individual specialists for each subset of their symptomology, sometimes giving rise to a formidable roster of specialists and sub-specialists. At least to some extent, this depends on the severity of involvement across organ systems (to the degree that only highly specialized physicians can manage the level of dysfunction that is present in each system).

[Kessey]

sorry, made a mistake about the broken bone. It was the first metatarsal bone not the phalange. The big toe bone but in the arch of the foot.  This is the second time I broke a foot without any specific recollection of when it happened. Go future!

[Kessey]

I went to my foot doctor, he supposedly specializes in diabetic foot problems.  I told him all of the above and after x-rays diagnosed a broken first phalange and cracked ankle bone. When he tried to inject a cortisone shot into my ankle, the needle bent so he had to use a bigger bore needle.  He said that I had a lot of scar tissue in my ankle, probably from the frequent falls. I have significant diabetic neuropathy in my feet.  He said not to wear the stockings, I go back to my autonomic doctor in 2 weeks, we'll see what he says.  I know the x-rays show broken bones but it really feels like nerve pain to me.  I've been thinking that I should find a neurologist. Which do you recommend, neurologists or a neuromuscular specialist? I've never heard of that kind of doctor.  Thank you so much for the info.

[Heiferly]

Have you been diagnosed with small fiber peripheral sensory neuropathy?  Is that what you are referring to when you say is this "just more neuropathy?"  

http://www.medhelp.org/medical-information/show/74/Peripheral-neuropathy?page=3

If so, your doctors may not want you wearing compression down by your feet at all if that's an area where the nerves are highly affected.  You need to contact the physician that diagnosed and/or is treating your neuropathy (possibly a neuromuscular specialist?) and ask about this.  If that doctor says the compression stockings are a no-go with the neuropathy, particularly in light of the symptoms you are describing here (make sure you tell those to the doctor just as you have here), there may be other options.  

I had the same problem due to my neuropathy.  When I saw the autonomic neurologist and told him I'd been instructed to stop wearing the high-grade compression stockings used in autonomic dysfunction, he recommended abdominal compression instead; he said many patients prefer Spanx (brand name) over medical abdominal binders for comfort reasons as well as cosmetic reasons (they're more attractive and less "medical" looking).  Unfortunately, Spanx will not be covered by insurance.  They vary in price and level of compression; he said to look for ones that cover the abdomen well and go down over the thighs.  Some are available in major department stores, but you will find a larger selection online such as on amazon.com, etc.

Let us know what your doc says and if that suggestions is of any help.  Hopefully you'll get a good solution soon!!  But don't keep wearing them through the pain without consulting your doctor!  Pain is your body telling you SOMETHING, so listen up and confer with your doctor to find out what the message is and how you need to proceed.  

Best,
-Heiferly.