Help me diagnose

Posted by bbk186 @bbk186, May 26 6:40am

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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@deb4

I had a bunch of blood tests that's shows lots of inflammation, but there is no idea what is causing it. The dr doesn't know if there is a correlation between the numbness/ compression in the vertebrae and the inflammation.

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What about a course of dexamethazone?

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@sandysurf

First of all, you’re right. Healthcare in the US is crap. I take 1200 of Gabapentin daily for the lower legs pain and hot wires (that’s what it feels like, anyway). Neuropathy was the diagnosis, although I’ve never been “properly” diagnosed. I live in Florida, and the usual wait time is around three to six months. I also have Tardive dyskinesia and the only doctor I could find that deals in movement disorders is booked into 2026. You didn’t say what country you live in, but wherever it is sounds like it’s a lot better than the US. Sandy

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What tests did you do for diagnosis? What medication helps you? I'm from Asia. I just don't wanna give all the details.

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@marialyce

What about a course of dexamethazone?

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I've taken Prednisolone 10 mg 3times a day but didn't help.

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@bb03

I have severe arthropathy in my lumbar and arthritis in my sit bones which caused pain in low back with pain down the legs. Steroid injections and RF ablations didn’t help. My conditions are chronic so you have to find what works for you. I eat healthy and drink lots water and move. Nothing bouncing just do my activities of daily living and walk. My pain Dr and Ortho Dr ordered high does of prescription anti I inflammatories and nerve pain pills. I only take Celebrex 100 mg and Gabapentin 100 mg every morning along with R lipoid acid and a multi Vitamin that has B6 in it of course. B6 itself is good for your nerves. At lunch I take Fish oil( Omega three), tumeric, osteo biflex and sea Buckthorn oil. I will also drink Ginger peach tea. I eat lots of fruits and veggies and lean meat, sprouted grain bread which comes frozen and if I eat rice it’s a small portion. Limit sugar and white bread like in pastries to only. occasional. What had helped me the most is my ice packs and my heating pads. When I drive I sit in a heating pad plugged into my cigarette lighter which I don’t smoke and put it on medium heat. If I have done a lot of standing I will use an ice pack. On low back and I may sit on it too. Just 20 minutes at a time. This keeps it under control. I still suffer each day but without being drugged to death! All meds have side effects. I tried a larger of gabapentin and tried Lyrica but it made me so sedated and constipated. I also make home made yogurt which helps inflammation. I agree with the physical therapist about the intermittent clarification even though your may be mild and mixed with arthritis. It’s a B getting old. I also know after being an RN for a long time that modern medicine who is to a large percentage ruled by big pharma want to treat with medicine to mask your symptoms not treat the cause. Pray for God to give you wisdom to seal out a Dr that will listen to you just be careful with filling your body with medicine that have major side effects.

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I wish u the best

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@bbk186

Which blood tests? I got almost all kinds of blood tests but nothing problematic shows up

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Lipase
Amylase
Anca panel w/refex
Angiotensen converting enzyme
Glyco hub
Cbc w/different
Lipid panel
Comprehensive metabolic panel
Pt & put
Sedimentation rate

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@deb4

Lipase
Amylase
Anca panel w/refex
Angiotensen converting enzyme
Glyco hub
Cbc w/different
Lipid panel
Comprehensive metabolic panel
Pt & put
Sedimentation rate

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I believe I have done most of these. How were your result?

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It sounds to me like your pain originates from your spine, and you should have diagnostic injections along your spine – your lumbar spine to find out the offending or impinged nerves. It sounds similar to me and I’ve had surgery lumbar surgery because I have disc degeneration and it solves things for a while, years. But now the burning pins and needles numbness and all that stuff returned. I’m too early for another lumbar surgery with deterioration outside of The attended to area and I don’t wanna pump my body full of more Cortizone. The only answer was to up my exercise! That did help two months on a stationary bike in the morning for about an hour hour and a half has allowed me to get back to sleeping at night and minimalize the pain. There’s a variety of pains, some originate from my spine and others are arthritic in my ankles feet and big toe. Some of this depends on the weather my arthritis aggravates me a lot during barometric pressure change. Continue seeing doctors. I recommend that a good orthopedic surgeon. Be the head of your umbrella and get a plan of care working with other doctors and continue to go back to your orthopedic surgeon a few times a year. There is hope and never give up on that hope. I suggest staying away from ibuprofen as it’s really damaging to your body and I ended up in the hospital very early on 20 years ago. Only then was I put on light opioid where I stay till this day and it’s very stabilizing for the pain I can’t get rid of Parentheses cause you can only have so many surgeries) and the biggest focus is keeping my body strong at 68.

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@loriesco

It sounds to me like your pain originates from your spine, and you should have diagnostic injections along your spine – your lumbar spine to find out the offending or impinged nerves. It sounds similar to me and I’ve had surgery lumbar surgery because I have disc degeneration and it solves things for a while, years. But now the burning pins and needles numbness and all that stuff returned. I’m too early for another lumbar surgery with deterioration outside of The attended to area and I don’t wanna pump my body full of more Cortizone. The only answer was to up my exercise! That did help two months on a stationary bike in the morning for about an hour hour and a half has allowed me to get back to sleeping at night and minimalize the pain. There’s a variety of pains, some originate from my spine and others are arthritic in my ankles feet and big toe. Some of this depends on the weather my arthritis aggravates me a lot during barometric pressure change. Continue seeing doctors. I recommend that a good orthopedic surgeon. Be the head of your umbrella and get a plan of care working with other doctors and continue to go back to your orthopedic surgeon a few times a year. There is hope and never give up on that hope. I suggest staying away from ibuprofen as it’s really damaging to your body and I ended up in the hospital very early on 20 years ago. Only then was I put on light opioid where I stay till this day and it’s very stabilizing for the pain I can’t get rid of Parentheses cause you can only have so many surgeries) and the biggest focus is keeping my body strong at 68.

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My MRI of spine is actually good and no doctor ever said it's causing problem. Also, I don't have back pain.

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@bbk186

My MRI of spine is actually good and no doctor ever said it's causing problem. Also, I don't have back pain.

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You asked for a diagnosis. I gave you one. It could be originating from your facet joints, your sacroiliac, and other places. But it goes back to the spine, usually. Impinged nerves exiting the spine can cause this kind of disruption. You can also go to an EMT nerve doctor, who will test the nerves' firing/not firing, and they can determine the source as well. You don't have to have back pain as the pain is being referred FROM the spine, vertebral, facet joints, myomuscular source, and it is showing up as pain in your legs. It sounds like you pinched a nerve on your airplane ride, and you haven't recovered. You can go to an MFR therapist and get treated there. If it is resolved, then it was a myomuscular issue, and your back was destabilized in the process. you could also have some peroneal disorder. Its impossible to know because although you believe you provided sufficient info for a "diagnosis," there is not enough information about your history. Start with the Orthopedic Surgeon and work down - instead of the other way around. but an MFR therapist is the happy middle. if he makes you feel better you will know what the problem is.

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@bbk186 we are not doctors, so we are not allowed to diagnose anything.

From what you wrote, it sounds like what happened to my friend. He has PMR. Polymyalgia Rheumatica.
It’s an autoimmune disease that has systemic inflammation, pain and stiffness.

If you have PMR, your Rheumatologist can help you. Usually a low dose of Prednisone helps him.

Hope you find what you are needing to feel better.

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