Help me diagnose
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!
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what symptoms do you have from Lyme in addition to these?
Early on after tick bite I thought I had the flu; body aches all over, stiff neck, headache, extreme fatigue, blurry vision, brain fog; but Lyme affects differently from person to person7.
And when did your husband develop issues in legs?
Well, it seems like you have been treated with so many highly technical treatment regimens, it's difficult to know what to suggest. However, can you exercise your calves or is the pain too intense? Also have you tried any non-prescription supplements such as grape seed extract , horse chestnut oil, lycopene, and as a more surgical/medical procedure try nerve ablation treatment as they do with some back pain patients.
Since you have that pain in both lower legs, then, I think it is a problem more systemic in nature than localized to leg nerves, unless it somehow is stemming from random back nerve pressure. I have badly aching knees and easily fatigued lower legs following April's arthroscopic surgery of my left knee, but I'm hoping exercise will strengthen those leg muscles enough that the pain and fatigue will go away before long. As far as pain relievers go, I've had success with meloxicam 50 mg daily. It lasts longer than other NSAIDs (one tablet per day) and/or Tylenol wherein the pain relief lasts only a few hours. Meloxicam is synergistic with Tylenol which is nice.
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1 ReactionThe only supplement that helped me is alpha lipoic acid for tingling but it didn't help with pain or burning sensation. Meloxicam didn't help.
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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1 ReactionMy vitamin B6 level is ok. I'll still look into it.
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1 ReactionI was once again gong to suggest Lyrica but I reread your text and see you tried it for 6 months ? It never helped for an extended period of taking it for 6 months? I also think green tea extract capsules are worth a try. Are there any other meds on your list that you plan to try to see if they help? I don't think a blood test necessarily is effective in determining if you have an infection. I think you need an x-ray or CT Scan of your foot to see what the localized inflammation looks like and see how it appears to have manifested itself, and if it looks infected. I think taking an antibiotic for a week or so is a pretty easy thing to try to see if it helps. As for the sacroilitis, would a steroid injection be worthwhile since the doctor definitely identified inflammation in the sacroiliac joint. I apologize if I have suggested things to try that you have already completed, there's a lot to read in your text message.
After a long flight in an uncomfortable seat, I ended up with extreme pain on my left side at my shoulder blade. MRI showed compression in the cervical section. Medication didn't help. I started acupuncture, massage therapy, cupping, and physical therapy with tens (?). It's been 8 months and I have numbness in my little and ring fingers on my left hand. All this from a plane ride.
So, I was prescribed 82.5 mg pregabalin twice a day and itdidn't help and later switched to tarlige which didn't help either. I took nsaids of different types which didn't help either. I got CT angiogram, ultrasound and MRI a few times in different countries. Only a slight inflammation was found at 1 hospital.