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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@lpmikey66

So very sorry you are going through this. How frustrating for you! I don’t have any suggestions, but just wanted to tell you I care.

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Thank u. Much love.

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@meryw

Okay. Don’t be mad but have you or anyone else considered a conversion disorder? And I’m not talking about hypochondria or psychosomatic illness. A conversion disorder occurs when your brain malfunctions and sends the wrong signals to your body. When no one could diagnose my physical problems (also involving serious physical pain) I looked into it. As a matter of fact, I was hoping that it was a conversion disorder since half the battle of “curing “ it is knowing that you have it.
It can cause severe pain and even blindness and deafness. It’s no joke.
But it’s treatable. Read up on it. There’s a fancy new name for it now but if you search for it, there’s lots of information. Mayo even wrote about it.
What you experienced on that plane was traumatic, plain and simple. I’m sorry for your experience and your pain and I hope you find the answers that you’re looking for.

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Wondering if this is like TMS? Sounds interesting, thank you.

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My husband had similar symptoms in both legs. After several labs showing nothing, he got back on Doxycycline for couple of days, and all symptoms went away. We both have Lyme disease and only take Doxy when we have flare ups. The ticks that infected us were like grains of sand. We live in the city, but the ticks attached while walking in a small park. About the only lab we found that specializes in Lyme is IGENEX in California. Lyme "the Great Imitator" can mimic almost any disease. It's everywhere inspite of what we're told. You don't have to be in the forest to be bitten by ticks. We've dealt with this for 5 years and you'd think we would have suspected his leg issues to be Lyme related, instead of going thru 2 specialists, tons of labs, prescriptions and then one morning as his legs were worsening I looked at him "Duh? ... maybe Lyme flare up?" Two days later .. all symptoms gone! The Spirochettes (Lyme bacteria) love 'traumatized' areas to attack and settle in. We found a Lyme-literate/trained doctor by visiting website ILADS early into our journey because few doctors have been trained to diagnose/treat Lyme and the CDC's guidelines for labs/testing is very antiquated and inefficient (Surprise, Surprise!:) After about 3 months of taking/rotating several different antibiotics, antivirals, antifungals, etc., we got the symptoms under control and for past 4 years have been almost totally on herbal supplements to keep our autoimmune system at it's best. We're told Lyme is never cured; it forms a shell-like covering and goes into kind of a dormancy until 'trauma' or weak immune system presents, then it becomes active. As with cancer patients, our doctor told us very early on to cut out sugar and gluten, which has helped deplete inflammation. Hope this rambling helps.

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@dianne47

My husband had similar symptoms in both legs. After several labs showing nothing, he got back on Doxycycline for couple of days, and all symptoms went away. We both have Lyme disease and only take Doxy when we have flare ups. The ticks that infected us were like grains of sand. We live in the city, but the ticks attached while walking in a small park. About the only lab we found that specializes in Lyme is IGENEX in California. Lyme "the Great Imitator" can mimic almost any disease. It's everywhere inspite of what we're told. You don't have to be in the forest to be bitten by ticks. We've dealt with this for 5 years and you'd think we would have suspected his leg issues to be Lyme related, instead of going thru 2 specialists, tons of labs, prescriptions and then one morning as his legs were worsening I looked at him "Duh? ... maybe Lyme flare up?" Two days later .. all symptoms gone! The Spirochettes (Lyme bacteria) love 'traumatized' areas to attack and settle in. We found a Lyme-literate/trained doctor by visiting website ILADS early into our journey because few doctors have been trained to diagnose/treat Lyme and the CDC's guidelines for labs/testing is very antiquated and inefficient (Surprise, Surprise!:) After about 3 months of taking/rotating several different antibiotics, antivirals, antifungals, etc., we got the symptoms under control and for past 4 years have been almost totally on herbal supplements to keep our autoimmune system at it's best. We're told Lyme is never cured; it forms a shell-like covering and goes into kind of a dormancy until 'trauma' or weak immune system presents, then it becomes active. As with cancer patients, our doctor told us very early on to cut out sugar and gluten, which has helped deplete inflammation. Hope this rambling helps.

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What were his symptoms?

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Pain, swelling that started in feet then worked up almost to knees, redness, warm to touch.

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@dianne47

Pain, swelling that started in feet then worked up almost to knees, redness, warm to touch.

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I don't have swelling or temp. change in my legs.

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@dianne47

Pain, swelling that started in feet then worked up almost to knees, redness, warm to touch.

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what symptoms do you have from Lyme in addition to these?

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@bbk186

what symptoms do you have from Lyme in addition to these?

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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.

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@dianne47

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.

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And when did your husband develop issues in legs?

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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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