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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Profile picture for bbk186 @bbk186

Did anyone try quinine sulphate or/and carbamazepine for leg pain/burning/tingling?

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Here is what the Canadian Medical Association Journal has to say about using quinine sulfate for leg cramps:
https://pmc.ncbi.nlm.nih.gov/articles/PMC4347765/
It appears that it is not clearly helpful, and carries a number of side effect risks.

And here is what Practical Neurology had to say about several drugs, including the ones you mentioned:
https://practicalneurology.com/diseases-diagnoses/neuromuscular/muscle-cramps/31559/
It should be noted that while it often helps, carbamazepine (brand name Tegretol) can have significant risks for confusion, falls, dizziness and other side effects in older people and those who take multiple medications. My aunt had serious mental confusion and hallucinations when this was prescribed for severe restless leg syndrome.

All that said, some neuropathy patients do find some relief from carbamazepine - you will need to work with your neurologist to find out if it is safe for you to try.

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Profile picture for Sue, Volunteer Mentor @sueinmn

Here is what the Canadian Medical Association Journal has to say about using quinine sulfate for leg cramps:
https://pmc.ncbi.nlm.nih.gov/articles/PMC4347765/
It appears that it is not clearly helpful, and carries a number of side effect risks.

And here is what Practical Neurology had to say about several drugs, including the ones you mentioned:
https://practicalneurology.com/diseases-diagnoses/neuromuscular/muscle-cramps/31559/
It should be noted that while it often helps, carbamazepine (brand name Tegretol) can have significant risks for confusion, falls, dizziness and other side effects in older people and those who take multiple medications. My aunt had serious mental confusion and hallucinations when this was prescribed for severe restless leg syndrome.

All that said, some neuropathy patients do find some relief from carbamazepine - you will need to work with your neurologist to find out if it is safe for you to try.

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Thanks

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Symptoms seem somewhat consistent with CRPS?

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Profile picture for sherlockholmes221b @sherlockholmes221b

Symptoms seem somewhat consistent with CRPS?

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People who have crps have had an injury prior which I didn't have. I don't know what's going on

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Profile picture for bbk186 @bbk186

People who have crps have had an injury prior which I didn't have. I don't know what's going on

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Not always. There are different variants. Mine first showed up after surgery. Some cases are not related to injury or surgery.

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Ok, I feel for you. Can't diagnose but have a similar story.

I was living in a small resort town in Appalachia, few doctors.
I shoveled my 60 degree driveway for several day. I used the same position for the shoveling and was so pleased to have found one that worked with ease.I was about 65. I have PTSD, new, corrupt nerveous system but had never experienced nerve pain.

I was fine for a couple of days. One the third day, I awoke and was having trouble walking. Difficulty reaching to the floor for my dog's bowl. I had shooting pain from my waist down. Each shot of electricity caused fierce pain, nothing like I had ever experienced before. Therefore, I knew it was nerve pain.

No pain relieves helped. I went to chicago to visit my daughter, still in terrible shape, and broke out in the hives. So, I put myself on Deltsone, 70mg. the first days. All the nerve pain vanished. (Becasue of intervention by a non-profession on a half board the pain had gone from my waist to my neck. One day I reached up in a cabinet, and felt a shooting pain of about a second length, go from my upreached hand, to my neck, down my back, split and go down my legs!) I had seen a Neuro. and he diagnosed SI-Jt disfunction after an hour of examining me. He asked me to hop up on the table and drop my rt leg to the floor. Ouch! I saw a stellar orthopedist in Atlanta and he said SI Jt dysfunction was difficult to diagnose.

In Chicago again, knew better. shoveled for about 30 mins. the pain began in my hands and wrist. Went to ER. Tests performed. Saw top Neuro at Northwestern. Orthopedist. No diagnosis. But to me this sounds a lot like your airplane seat issue that has pledged you for yrs.

My body doesn't like to twist. And the shoveling motion was a twist with weight added. This was the beginning of strange nerve pains. But manageable. I was on the prednisone for months and the doctors allowed me to get off it on my own. I did, nerve pain gone!

Good luck.

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I’m not a doctor but I’ve had enough surgeries and medical issues to be one. I’ve heard most often that people on long flights develop blood clots in their lower legs. I developed clots after a bad car accident, 5mg of Eliquis broke them up. Just throwing it out there in case you didn’t get tested for that. Just a thought. Good luck

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Profile picture for highlands1946 @highlands1946

Ok, I feel for you. Can't diagnose but have a similar story.

I was living in a small resort town in Appalachia, few doctors.
I shoveled my 60 degree driveway for several day. I used the same position for the shoveling and was so pleased to have found one that worked with ease.I was about 65. I have PTSD, new, corrupt nerveous system but had never experienced nerve pain.

I was fine for a couple of days. One the third day, I awoke and was having trouble walking. Difficulty reaching to the floor for my dog's bowl. I had shooting pain from my waist down. Each shot of electricity caused fierce pain, nothing like I had ever experienced before. Therefore, I knew it was nerve pain.

No pain relieves helped. I went to chicago to visit my daughter, still in terrible shape, and broke out in the hives. So, I put myself on Deltsone, 70mg. the first days. All the nerve pain vanished. (Becasue of intervention by a non-profession on a half board the pain had gone from my waist to my neck. One day I reached up in a cabinet, and felt a shooting pain of about a second length, go from my upreached hand, to my neck, down my back, split and go down my legs!) I had seen a Neuro. and he diagnosed SI-Jt disfunction after an hour of examining me. He asked me to hop up on the table and drop my rt leg to the floor. Ouch! I saw a stellar orthopedist in Atlanta and he said SI Jt dysfunction was difficult to diagnose.

In Chicago again, knew better. shoveled for about 30 mins. the pain began in my hands and wrist. Went to ER. Tests performed. Saw top Neuro at Northwestern. Orthopedist. No diagnosis. But to me this sounds a lot like your airplane seat issue that has pledged you for yrs.

My body doesn't like to twist. And the shoveling motion was a twist with weight added. This was the beginning of strange nerve pains. But manageable. I was on the prednisone for months and the doctors allowed me to get off it on my own. I did, nerve pain gone!

Good luck.

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What helped you?

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Profile picture for bobt8 @bobt8

I’m not a doctor but I’ve had enough surgeries and medical issues to be one. I’ve heard most often that people on long flights develop blood clots in their lower legs. I developed clots after a bad car accident, 5mg of Eliquis broke them up. Just throwing it out there in case you didn’t get tested for that. Just a thought. Good luck

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Ultrasound couldn't find anything.

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It sounds to me like you need an evaluation from a high quality specialist, perhaps even higher quality than an a regional hospital. What area do you live in? Would your finances and insurance allow for seeing specialists out of state?

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