Connect
Comment receiving replies
Background and symptoms: I've been suffering from lower leg pain in both my legs (from knees to feet) for the past 2 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..."
@bbk186
Just to confirm, did you have a MRI of your lumbar spine and pelvis/hips to check for compressed spinal cord/nerve roots/nerves/claudication/degeneration or soft tissue injury/damage?
Did your neurologist do a small fiber neuropathy skin punch biopsy taking samples of tissue from upper thigh and calf/ankle? Your symptoms sound similar. The restricted blood flow during a long flight and/or inflammation/fluid retention may have triggered and irritated your small fibers in your calves and feet.
Do you drink alcohol, smoke/vape, are you diabetic, were you tested for vitamin/mineral deficiencies/toxicities, etc. which are tied to small fiber neuropathy?
I can’t help with diagnosis but wonder if any of this might help.
Is there edema in your legs? If so, try sleeping with your legs raised and see if it helps. Even if you are a side sleeper try on your back with legs propped up a bit. It might give you an indication if it is related to blood vessels.
I always thought that you get to sit in a rocking chair when you get old. No way. Sitting is what kills you. Move your legs once an hour at least. Even if you feel pain, keep moving.
My thoughts: You are battling an autoimmune disorder. It is possible to have psoriatic arthritis without having psoriasis. Whether it is PsA or RA, it is likely that you had a “flare” on your terrible flight that created a “cytokine storm”.
From Cleveland Clinic on cytokines:
“Cytokines are signaling proteins that help control inflammation in your body. They allow your immune system to mount a defense if germs or other substances that can make you sick enter your body. Too many cytokines can lead to excess inflammation and conditions like autoimmune diseases.”
The question is how to calm down the cytokines. My symptoms have been similar and I have made great progress with anthocyanins that are in deep colored fruit and veggies. They are in blueberries, black beans, red cabbage, red onion, black rice, black raspberries, red or black grapes, black lentils, purple carrots, grape juice and wine. You have to “hunt” the produce department. Anthocyanins are fragile so they are best fresh or frozen without cooking.
You are very active and may not have the time to make your own food. It helps that I am retired. It is best to get anthocyanins from food, but there are supplements like bilberry extract that is grown in Finland. Bilberries look like blueberries but are blue throughout that gives them high anthocyanins.
Here is a link to a Cleveland Clinic article on anthocyanins:
https://health.clevelandclinic.org/anthocyanins
sometimes the answer is parasites.. homeopathic treatment
All I know is that it is quite common for people on long flights to get blood clots
I'm so sorry you've been going through this. I empathize. I've been on a 10+ year journey trying to get an accurate diagnosis for a variety of symptoms, including the lower leg ones you're experiencing. Last fall I went to see a movement disorder neurologist, due to other symptoms I was having, and she did a skin punch biopsy. That ruled out Parkinson's, thankfully, but it did show that I have small fiber neuropathy, which explains the numbness and tingling in my feet and lower legs (and now my hands as well).
I had had an EMG, but it turns out they don't pick up damage to the small fibers, only the larger ones. Using the skin biopsy results, combined with other tests and symptoms, I'm now exploring a broader diagnosis (e.g. autoimmune, dysautotomia, Ehlers-Danlos, POTS). There's a real shortage of doctors who truly understand how these diseases work, and specialists are going to specialize, but I'm determined to understand what's going on with my body.
Sometimes a precipitating event—from an accident or surgery to a fall or a horrible plane ride—can trigger the kind of symptoms you've been experiencing. Some of my symptoms showed up after I had shoulder surgery; others have been problems for me since childhood, but I never saw them as a part of a systemic disorder/disease.
Because my primary care physicians haven't been familiar with the disorders I mentioned above, and the standard tests have looked "normal" for the most part, I've had to do a lot of research on my own. I stick to well-vetted medical sites (Mayo, Cleveland Clinic, Hopkins, NIH, etc) and often have to seek out my own specialists, but I'm determined to find what's causing the symptoms, not just medicate them. One important reason for finding the cause is that treatment of symptoms varies depending on the diagnosis—e.g., opioids don't usually help with the fibromyalgia, certain kinds of exercise can exacerbate POTS tachycardia. Also, certain drugs work for some and not for others: I can't take pregabalin or gabapentin but have had good luck with duloxetine and low-dose naltrexone; others have had the opposite experiences.
I know this is a long post, but I hope it's helpful. Here are a couple of links for small fiber neuropathy that have really helped me.
Cleveland Clinic:
https://my.clevelandclinic.org/health/diseases/17479-small-fiber-neuropathy
Anne Louise Oaklander at Mass General (I love this video! Oaklander is not only a valued expert in the field but a great presenter:
Keep us posted on how you're doing. Let me know if you any questions about my post. Take care.
Connect
Hi There bbk186, While none of us can diagnose you, we can give our thoughts.
My first thought was since it occurred after a flight was deep vein thrombosis or pulmonary embolism. Did you wear any type of support hose on your flight? Sounds like you were really cramped in the way you were sitting.
I would get another opinion from a vascular doctor/surgeon if you can get in ASAP to see one. I would try and reach out to a big well known hospital group for a 2nd opinion....I know, it's 6 months or longer for these specialists and tell them its urgent. I'm not sure where you live, but, is Mayo, Duke or Cleaveland Clinic a possibility?
I see a lot of things have been ruled out, but, you are still in a lot of pain and I am so sorry.
Praying for answers for you and relief ASAP. Blessings....