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Avatar universal

9 months of chronic intense bilateral lower extremity pain with no diagnosis

This is in hopes that someone can provide any type of help for my husband.

It all started with severe foot pain about a year ago. The tops of the metatarsal area was hurting and he said the bottom of his feet felt like he was walking on rocks. We went to a podiatrist who said his high arches were the problem and had custom inserts ordered.

After months of wearing the inserts with no relief, the pain had spread into the legs. This was severe deep muscle pain. We went to a general practitioner in July. He was diagnosed with Type 2 diabetes and was told the pain  was probably diabetic neuropathy. He was prescribed many different medications and sent on his way.

None of the medications have helped. He does not have the usual symptoms of diabetic neuropathy (no pins and needles, no burning, no electric type sensation, no sharp pain running up or down the legs). Gabapentin does not help. Neurontin does not help. Lyrica does not help. Cymbalta does not help.

Doctor ordered MRI on legs and the only thing found was a bone spur in one knee. Doctor then ordered dopplers on legs and found everything to be normal.

During this time weight loss had occurred of 120 pounds lost in less than a year. His appetite had decreased to nothing and he would only nibble on occasion. He ate less than a small child. Constipation had become a norm. Bowel movements decreased to about once a week to once every two weeks and only happened with the help of lots of Miralax.

Labs showed no muscle deterioration or inflammation.

CT scan was done in September to check for pancreatic cancer or other internal cancer that could show on a CT of abdomen. Nothing found on the CT scan except impacted bowels found due to the constipation.

Labs done for vitamin D deficiency showed a very low vitamin D count and he was prescribed a high dose Vitamin D pill once a week.

Labs for vitamin B showed a low vitamin B count and he was put on Vitamin B12.

Labs for Celiac disease negative.

Doctor said pain would decrease when blood sugar was under control. Last A1C was 5 and because his blood sugar was starting to become too low, the diabetic medicine has been decreased. Still no relief from pain with great blood sugar numbers.

The chronic pain in his legs has become so excruciating that he has constant trips to the Emergency Rooms for pain. One Emergency Room now refuses to treat him. This Emergency Room said they are not pain management and he should seek the advice of a second doctor. They gave a referral. We took all his medical records to the referred doctor. The referred doctor said the primary doctor has taken all the same steps he would. The Emergency Room still refuses to see him after going to the referred doctor.

Primary doctor did a referral to a pain management clinic. We called the pain management clinic and they said the doctor has a choice to take him as a patient or not. The pain management clinic said they will call if they choose to accept him or send a letter if they choose not to. We spoke to the clinic 3 weeks ago and still have not received a letter or a phone call.

His pain is so intense that he passes out sometimes. He has not been able to work for about 2 months now. His balance has been an issue for about 2-3 months and he falls down or into walls. He hits his head sometimes which scares me.

He went to see a neurologist. The neurologist does not know what is going on. The neurologist recommend genetic testing and also referred him to see a peripheral nerve specialist. The neurologist said the peripheral nerve specialist should do nerve conduction studies, a muscle biopsy,  and a nerve biopsy. We are still waiting to see a peripheral nerve specialist and was told it could be months.

He has insurance from work for temporary disability but no doctors will fill out the forms without a diagnosis.  He has been with his job for 16 years and now has to see doctors or emergency rooms to get a note for work every 3 days just to keep his job. There is no money coming into our house except my little income and the bills are piling up quickly. I am scared we may be out on the streets if things don't change. Without a diagnosis there is no temporary disability available to help with income, there is no treatment for what is happening,  and he continues to be in severe constant pain. I get to watch him suffer day in and day out with no hope in sight for who knows how long. He can't sleep and is only a shell of himself. He has recently said that he has had dark thoughts about ending it all to stop the pain.

He was a big strong security guard who instilled fear with just a look. He had withered away from a muscle bound 250 lbs to frail 190 lbs and it continues to decrease.

I have just noticed blood in the toilet. I don't know if it is from taking so much Miralax,  or if it is something more serious. I will suggest a colonscopy to the doctor. Can colon cancer cause severe leg muscle pain? Not sure. Wouldn't that have shown on the CT scan?

Most recent other symptoms (may or may not be related):
1. Rash like bumps that turned into brown spots at groin/thigh area
2. Pains in hands and arms that comes and goes and different from the intense, constant the leg pain. The hand/arm pain is more like muscle spasms or cramps.
3. Occasional hand tremors
4. Memory seems decreased (may be due to medicine)

I am even considering buying marijuana (illegal in our state) just to see if maybe that might provide him some type of relief. This is not something I would ever normally do and goes against my belief system as it is considered illegal. That may sound bad but if you were in my shoes and heard his pain on a daily basis, you would understand.  

I am at a loss and I don't know what to do anymore! I have started to give up hope that he will have an answer any time soon. I hear him cry out in pain all the time and feel so utterly helpless. If anyone has any possible suggestions as to what could be causing this, your opinion would be very much appreciated! Thank you for taking the time to read this.

4 Responses
Avatar universal
Update: The weight I listed in the post was wrong and I need to correct that part. He was over 300 lbs a little over a year ago and he is now 190 lbs. 250 lbs was when he was looking his best in the middle of the weight loss before we became worried.
Avatar universal
...and labs for thyroid issues were normal.
Avatar universal
I was having many of the same problems that you're husband is having and I recently got diagnosed with May-Thurner Syndrome (Left Iliac Vein Compression). It's a condition that usually only gets diagnosed if you develop blood clots and deep vein thrombosis. The problem is most people never develop blood clots with May-Thurner so it rarely gets diagnosed. Both my legs hurt all the time and no doctor could figure out what was happening. I finally found an Interventional Radiologist that was familiar enough with this condition to know it was a likely cause of my problems.
You should also get checked for another similar condition called Nutcracker Syndrome (Left Renal Vein Compression). It's a chronic debilitating condition that can cause all of the problems you're husband is having. It can cause extreme weight loss and possibly even Type 2 Diabetes. Unfortunately most doctors have never heard of either of these Vascular Compression Syndromes so they are rarely diagnosed. I have a friend that has both of these conditions and many of the same problems. They can also cause extreme fatigue, anxiety and depression as well.
Try to find a Vascular Surgeon that is very knowledgeable about both of these conditions. Join a Nutcracker Syndrome group or a May-Thurner Syndrome group on Facebook. There are some very helpful people in these groups that are going through the same things as your husband. They can give you some great advice as to how to get checked and potentially treated if you do indeed have either or both of these conditions. Hope this might help!
1 Comments
Thank you so much for your response. However, I don't think it is May-Thurner syndrome. I researched this syndrome and it said "lower left extremity". He currently has pain in both extremities.

May–Thurner syndrome limits the flow of blood to the left lower extremity.

He had a doppler ultrasound to check the blood flow in his legs.
A Doppler ultrasound is a test that uses high-frequency sound waves to measure the amount of blood flow through arteries and veins, usually those that supply blood to the arms and legs.

I still need to research Nutcracker syndrome.

He said it feels like muscles and/or tendons in his legs and feet are causing the pain. He said it feels like the muscles bulge out and become stiff/rigid possibly pulling at muscle attachments to the bone. He said this is the best way he can describe what seems to cause the pain.
Avatar universal
Unfortunately there is very little known about May-Thurner Syndrome. I had pain and weakness in both legs from this condition and after having a stent placed the pain in both legs was gone by the next day. I would really encourage you to join a May-Thurner support group as many others have Pain in both legs not just the left leg.  It can also cause balance issues which I had as well as cognitive dysfunction and memory loss. Ultrasound is usually useless in detecting May-Thurner as it occurs higher up in the thigh. I had multiple ultrasounds and CT scans and even a Pelvic Venogram that all missed the fact that I had severe compression of the Left Iliac Vein. It wasn't until a doctor was specifically looking for this condition that it was finally discovered. The Nutcracker Syndrome does sound more like what he may having going on but it is very important to find someone that knows to check for all compressions including May-Thurner Syndrome.
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