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Background and symptoms: I've been suffering from lower leg pain in both my legs (from knees to feet) for the past 3 years. The symptoms are mainly extreme pain, fatigue/ exhaustion with activities, and pins and needles and burning sensation most of the time, but no skin psoriasis, swelling, or other physical symptoms. This problem started all of a sudden after a long flight (approximately 8 hrs) on a plane where my seat was mechanically damaged, and I couldn't recline it; the guy in front of me reclined his seat entirely, so I didn't have any space to move my legs properly. I requested him, as well as the air hostess, to change my seat to no avail. The pain started after I got off the plane and increased exponentially as I walked through the airport. Since then, it's been a disaster. I don't have these symptoms anywhere else in my body, not even in my upper legs or anywhere else in my body. Before this flight, I never ever had this type of pain in my life.
Diagnosis so far: My initial treatment was done in the US. US healthcare is crap, but I didn't know until I got a first-hand experience. My dumb primary care provider put me on 200/400 mg Ibuprofen and then switched to acetaminophen of low strength despite my terrible symptoms. He didn't give me any stronger painkillers or local anesthesia despite my thousand requests; they just kept saying that it was an unusual pain throughout all our meetings. After 3 months, he realized that it's getting even worse so he thought it could be nerve issue so he gave me gabapentin and later switched to pregabalin which were also of very very low strength. Later, he told me to take only multivitamins as my reports (by that time, I had done blood tests, urine tests, an MRI of my lower legs and back, and CT angiogram of my legs) were ok. During this entire period, I consulted a few doctors of different specialties, but they said that as the reports are fine, we can't help you. Also, the wait time to schedule any test or appointment is extraordinarily long in the US and it definitely exacerbated my condition. That time my symptoms include-- achy pain, shooting and burning sensation. I couldn't stand for more than 30 minutes at all and couldn't walk for more than 15 minutes without terrible pain.
I came back to my native country after about a year as by that time I was told by my medical care team that I might be able to fly now and since then I consulted a few doctors of different specialties. My physical therapist suggested that the symptoms relate to arterial disease like intermittent claudication but, my test reports are normal. My Ultrasound says 30-40% blood flow reduction in the anterior and posterior tibial artery, but the Vascular surgeon said it's normal. I did the same tests in the US earlier, and the Vascular surgeon in the US said the same thing and also said that apart from the pain, nothing else matches with vascular problems, especially as I don't have any physical appearance similar to vascular disease. I was given Naftidrofuryl oxalate - a vasodilator for 2 months, which didn't abate the pain at all, so I believe it's not a vascular issue. I got all sorts of blood tests (HLA B27, RF factor, C reactive protein, CPK, lactate, uric acid, D-dimer, CBC test, almost any kind of blood test imaginable) and imaging tests(MRI, ultrasound, CT angiogram) done along with nerve tests (EMG and NCS). These tests have been done routinely and multiple times in different hospitals in 3 different countries, and the results are fine every time. The only test I couldn't get done is called myositis metabolic panel because it's not available where I'm now. My neurologist also said that it's not a nerve issue. Recently, 2 MRIs were done by my Rheumatologist and he found just a slight inflammation in my calves but the other MRI suggests that I have pretty good inflammation in my tendon and joint in my foot. My rheumatologist now says that it's peripheral spondylo arthritis. According to him, peripheral spondylo arthritis is observed through ultrasound or imaging tests rather than blood tests, hence nothing shows up in my blood tests reports. I asked him if it could be due to any infection but he denied that and said if it were due to any infection, then it would be found on a blood test by now. I know that ultrasound is a subjective thing that depends on the person who's performing it(technologist/doctor) but I'm just so confused and skeptical. I still have those symptoms- achy pain, burning sensation. Although sciatica is mostly found in one leg but I have these symptoms in both legs. I took pregabalin for 6 months but it dedn't help me at all. My EMG and NCS are also fine. My MRI which I got done here in my country suggests I have mild sacroilitis which I've attached here though the doctors said it's fine and not necessarily a dangerous sign.
I find it very weird that due to a bad flight, I developed arthritis/ sciatica all on a sudden. Does anyone relate to my symptoms? Has anyone ever had a similar experience? I need some suggestions, please!
Replies to "Background and symptoms: I've been suffering from lower leg pain in both my legs (from knees..."
My case is kind of similar. All started around one day one and half years ago I walked about 18000 steps in preparation for a house warming of a family member. Started with cramps and then slowly pains in the shin and foot areas. Unable to stand or walk after getting up in the morning after painful night in spite of Pregabalin . All possible tests came negative after seeing all possible specialists. Now I am seeing a podiatrist who ordered tests called ABI and TBI to test blood pressure in the ankle and in all the toes. Waiting for results. I totally understand your pain and frustration….
I have itching and pain in the skin on my face. It started with my eyelids and now is perfect oultine of my face, no rash. Someone mentiond that it might be related to my neuropathy. Has anyone ever heard of something like this?
I have many of the same symptoms as you describe. After a year of medical study from three different fields of Dr.s I have been diagnosed with: Idiopathic progressive polyneuropathy. That being said to me it means that they don't know how I got it or what if anything to do but treat symptoms with drugs. My drugs of choice are gabapentin 1200mg, and low dose tramadol 1/2 of a 50 mg in the afternoon. I have spot pain on my legs, buttocks and arms. I use two other products for those. magnalife nerve relief roll-on otc. And a 5% lidocaine cream ( Its a hemorrhoidal relief product). I have not tried the lidocaine patches yet. I also dissolve 1/3 of a zolpidem as I go to bed under my tongue. Works wonders for my sleep. Stay away from the ads for PN. cures. Some others get some relief from a few creams of herbal stuff so I read. I am working with a homeopathy acquaintance with a few of his concoctions. Exercise if you can and work on balance by standing on one foot anytime you think of it. I have a stationary bike that is good for leg work. Share anything that works for you to us please.
Well, since the Dr's weren't very helpful, this info can't be any worse.........I just found a book for myself..........Neuropathy Reversed, by Stephanie J. chaney $ thomas A Chaney DC
Regardless of what is or isn't the diagnosis, since the Dr's can't really be sure of, this book just might have a little help for you. The one thing in the book, i have never heard of, but found interesting is called REBUILDER..........You can use it to attach to the bottom of each foot, and it travels sort of like going up one leg, and i guess going to the other leg and traveling back down, and is supposed to help with rebuilding the weakness legs have..........You can check out the website at Rebuilder Medical .com.......i think that is right............Regardless of what diagnosis you may or may not have, if this can actually help rebuild your legs strength, i think it might be worthwhile to buy the book, and check out the Rebuilder. I guess altho it is a Tens unit, it is Different, as it has a lower frequency, and safer to use then the normal Tens unit. sorry i can't explain this very well, but at this point, a few bucks to buy the book, with the info might be a little bit of help..........you do need a prescription for this unit (other Tens units you can buy all over the place , so this one must be a little more medically ...helpful) If none of your Dr;s would write a prescription for it, you can call the company and talk to them, I think they will find a way to make it happen................Worse scenario, none of them will write a prescription, well then, what I would do, if i really wanted to use the unit 300............if see a Naturopath, or maybe possibly a chiropractor, and one of them would possibly write a script for you, if you take in the book so they can get a glimpse of what you are looking for........Let me know if you do get the book, and if the info might be the right path for you........
there are books on castor oil, which will be much better . But.......when applying anywhere you need...........plastic wrap, to help keep the oil from dripping all over the floor, etc.
then the actual castor oil books, say you need to wrap the flannel 3 layers thick, maybe 4. usually 3 layers.............then you need to saturate the flannel/castor oil. Some say saturate, then wring it out.........well, i saturate, i do NOT wring it out. then after wrapping it wherever i want , i would use something like an ACE bandage to hold it in place. In many cases, books say to then put a heating pad on top. In some cases tho, you do NOT use the heating pad.
........For my leg.........i wanted aprx 12 inches up the leg, so would get a piece of plastic wrap to wrap around the height and width .............i layered a large piece of flannel, which i would have enough to layer the flannel 3 layers deep............then saturate the cloth, lay it on the plastic wrap,, wrap it around the leg...........get whatever type of bandage you have, ACE, or anything that can hold it in place. Safety pins if necessary............However, i did decide to just wrap it around my entire foot instead, because i had more stiff feelings in my feet, and thought if it helps, i would be more aware, because of feeling something . My legs, need to be strengthened, but, i wouldn't really be able to tell as easily, if there was any difference, as i would think wrapping around the legs would take several treatments... After only the one treatment on my foot...........i don't notice any difference from the stiff feeling, but, i didn't really expect a miracle after only one treatment. If you can find the book MIRACLE OIL by David E. Kukor.............there are unbelievable medical problems that were cured , giving me hope that it too, could work on legs... there are other books/pamphlets out there, but NONE have the amazing stories this book has. I got a couple from Amazon, and E Bay, for aprx $8.........since individuals are selling them, they might be gone by now. But thrift books i think still have a couple, but they are $40.......
the one thing i really really want is a Microcurrent device........pre programmed by a Dr., to be used for not only legs, but also for many other problems to. I wouldn't buy one on the internet for only $100 - $300, as I doubt that they would be professionally programmed. and messing with these units, i would want to make sure i get the right frequencies needed, otherwise i could do more harm, then good...........I'm trying to find a Naturopath who already uses one in their practice, hoping i can purchase one from them, programmed for the areas i need............wishful thinking............i just have to keep searching. Microcurrent is safer then a Tens unit. Many books say, you can use a Tens as often as you want............but i always look for Cautions................One book, said, you actually can over do tens, and that could create a problem.............so microcurrent is not as intense............anyway, i still keep searching. today i am going to wrap one knee with the oil. I banged it up a couple of months ago, and it isn't quite back to normal yet, so i' should have....done the oil pack asap, but, i didn't. ....
My neuropathy came on all of a sudden--after taking two days of methylprednisolone for a sinus infection. The neuropathy is such an annoyance--it just goes on and on--but I don't have actual pain. I find myself having occasional sweats and feel weak. My muscles have wasted. No diagnosis has been given to me other than peripheral neuropathy. I had numerous tests--mainly to rule out cancer as I had dropped weight. This week I am heading to a cardiologist. I ended up in the emergency room two nights ago as I had tightness in my chest but EKG, blood work, lung x-ray and ultrasound of my legs (to check for DVT) all were okay. So what gives? It is beyond frustrating. I do agree that a good diet will probably help to an extent. I am trying to eat clean.
I’ve been researching about my b6 toxicity symptoms. I’ve learned that one can have normal NCS and doctors fail to test for Small Fiber Polyneuropathy. There are many different causes for neuropathy and there are different types of neuropathy. SFPN is often overlooked bc doctors don’t know how to test. There’s a lot of research about it. Click on the supportive links at the google title I gave to learn more about it and you’ll also find a check list for the labs and test needed to support the dx. I have my first appt in two weeks with the neurologist.,I hope they know about this. Im Praying we can all get the help we need. Because I’m a new poster , it wouldn’t let me send a link. Google: understanding b6toxicity .com and search for SFPN.
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I can relate to the mysteriousness of your symptoms. Here I am without any diagnosis. They say to avoid stress when dealing with autoimmunity;however, I find it stressful that doctors cannot figure out how I ended up with peripheral neuropathy. I do not fall into any of the categories i.e. diabetes or others. I had a bad sinus infection and took two days worth of methylprednisolone and voila--here I am with tingling, numbness and wobbly legs. My muscle tone is also messed up. Seeing doctors is difficult--more stress--and no resolution. My sympathies and support to those like me who are on a merry-go-round.