Illusive Diagnosis, Pain Increasing

Fibro has been mentioned. Rarely by someone who actually wanted to treat me for it, ironically. It was used as a brush off. I asked my neuro and pain doc about Fibro and they both told me my symptoms don't fit. It does run in my family so it may be a contributing factor.

@jeanniem Sorry for butting in but I was diagnosed by a rheumatologist 30 yrs ago They are the ones you should see They do the pressure points which there are 18 to see if you have fibro. Most Dr,s tell you it's all in your head ,some are a little bit smarter now then when I was diagnosed .Good luck There are fibro flares with this at times when you don't know where you hurt the worst and nothing you take helps Fibro can be managed to a point but you have to find the right Dr ,a rheumatologist .Then we all have different tools to help us .

Hello, @jeanniem. I’ve been so busy today, I have not had a chance to say it. So HI! Can you take me through your case...from the beginning please? One step at a time, slowly. Try starting from your instigating event if there was one? What happened to make the pain initially start the first time and where was it?

First, let me say that, given what I can see from your post, I don’t believe you are a hypochondriac. Have you ever met a true hypochondriac? I have. You’re female, correct? Do you think you have prostate cancer because you have the symptoms of it?

I am actually a mental health therapist. So I have worked with those with what we now call Medical anxiety. I know this is not what I have. But I also know how easy it is for some doctors to write me off. I guess I have become overly cautious and maybe a little too concerned about what they think. Earlier, I spent a good half-hour detailing my entire Journey and it failed to upload. I figure that's God's way of telling me to sum it up better. 🙂 I might wait until tomorrow to work on that, though.

Not a problem. I tend to stay up really late by normal standards due to my pain levels. And let me say this to you, anyone who states someone has a “mild” case of CRPS obviously does not KNOW what CRPS is. No offense, Mayo.

Years ago I had carpal tunnel in my wrist from overuse due to my job. My orthopedic dr. Prescribed Celebrex but it tore up my stomach so I asked for an alternative. He sent me to PT and prescribed a wrist brace to wear at night and during the day too, if needed. It held my wrist in the correct position. The PT was just simple exercises, but helped So Much!
As for the neuropathy, I also had the emg testing that showed nothing wrong, so my pinched nerves were the cause of mine. I think the remaining issues both in my feet and in my hands are more pinched nerves, I wish we could go in there with a rotor rooter and clean out all the bone Spurs!
Just another opinion, when testing doesn’t give any answers, don’t think you’re a hypochondriac or crazy. There’s just more searching needed. I had 4 different opinions before finding a doctor who actually listened. One doctor here in my area who is highly regarded, told me not to talk, he was going to be like judge Judy and ask the questions! Btw, he did not show me the MRI report when he met with me, just gave his opinion said it was my SI joints most likely. I’m going on and on but just can’t believe how arrogant some doctors are.

Wow, sounds like he had way more issues than your own body has! Way to hang in there!

I want to thank you for asking me to go over my case. I was frustrated, after writing it all out last night, that it didn't upload. However, after sleeping on it, I googled the very first diagnosis I was given, back in 1998. I have not mentioned this diagnosis to any of my current doctors because when I tell them that I feel like things started after an illness the information is set aside as irrelevant. Now, I wonder if it is the missing piece. So, thank you.

As I mentioned, I got very sick in 1998. I was only a year out of college. I ran a high fever, had swollen glands, sore throat, and extreme fatigue. My doctors put me through 3 rounds of antibiotics. Eventually, I got better but it took 6 months for me to gear back up to full time work. I saw an Infectious Disease doctor at the time. He did a lot of testing and eventually landed on a dx of Chronic Fatigue Syndrome. At the time it was a new diagnosis and pretty controversial. I have not felt "normal" since then. (Obviously, I have found a new normal.)

Odd things continued to happen. I tire easily, especially after working out or high stress. Things would randomly swell. I visited different doctors - even a psychiatrist - in an effort to find out what was wrong. In 2006, blood work showed a positive Anti-DNA result and I was diagnosed with Lupus and placed on generic Plaquenil. Within 2 years or so my blood work was all back to normal and stayed normal for years, even after I stopped the med. It was decided the blood test was a fluke and I did not have Lupus. For a while, my rheum gave me a diagnosis of undefined multi-connective tissue disorder or some such thing. When I moved and got a new doctor, they dropped that diagnosis, as well.

Fast forward to 2016. I began having discomfort in my 2nd toe on my left foot. I had numerous doctors tell me it was just metatarsalgia and to wear better shoes and take ibuprofen. The discomfort started to spread to my other toes and my ankle started to feel unstable. When I started to notice discomfort in the same place on my right foot, I decided it was time to pursue answers again. This was NOT going away with better shoes and ibuprofen. My 3rd podiatrist actually did an MRI and found what we then believed to be muscle edema in the very area I was complaining about. (We later learned this was actually muscle atrophy.) There was no evidence of injury to have caused this. Thankfully, this doctor was persistent and would not let me just give up. He was my first angel.

The first neurologist I saw did an EMG and told me it was normal. She also did MRIs on all 3 sections of my back. The reports showed foraminal stenosis on the L5-S1 but she said that is not worth mentioning because my central spinal canal is wide open and my EMG is normal. My podiatrist and PT both looked at the MRI reports and strongly disagreed. Apparently, the area of stenosis directly correlates with dermatomes in that exact area in my foot where there are problems. My PT did some traction on my back and toes that had been very difficult to move loosened up and moved quite easily. The benefit didn't last long but reinforced their believe that the 2 things were connected. (I now do traction regularly at the pool and movement of toes stays more limber.)

I saw a rheum who said my blood tests were normal and he couldn't help me. I saw a spinal doc who confirmed the foraminal stenosis - went so far as to say it was severe on the left side but firmly stated this was not related to what was happening with my feet.

Somewhere during this time, I began to have frequent muscle spasms. Daily, mostly centered in my lower leg, ankles, and feet but with "popcorn" sensations throughout my body. I don't even know if I mentioned this to any of the doctors I was seeing as it took so long to give them the other information/history.

I was then sent to a pain doc who did a back injection which really helped with the back pain but I didn't notice much difference in my feet. In fact, with the spasms hitting so often, my ankle, especially, felt like it was getting worse. The pain doc saw me while things were swollen and said my body was not reacting as someone with fibro (I had asked her about that, specifically.) She started me on gabapentin and suggested the Mayo referral. The gabapentin made a difference after my first dose. I know it isn't supposed to work that fast, but it did for me. I eventually upped my dose to twice a day. It knocked my muscle spasms (and popcorn) down to an almost normal level but didn't resolve the other pain and swelling issues. It was around this time that my PT asked if anyone had mentioned CRPS. I asked the pain doc about it and she said it was a possibility but she still wanted me to pursue the Mayo angle.

I got into Mayo through the spine clinic. That doc sent me through a much more extensive (and painful!) EMG which showed clear neuropathy in both feet, worse on the left. (Everything has been worse on the left.) He referred me to see a neurologist who ran a ton of tests and diagnosed me with small and large fiber peripheral neuropathy. I am diabetic but my A1C is well controlled. I have high arches and a Mom and 2 sisters who have peripheral neuropathy so we are assuming there is a genetic component. However, since every test that came back positive was worse on the left than the right and because of the swelling and slight color change with movement, he suggested there was more at play than neuropathy. The spinal doctor who brought me into Mayo disagreed and closed my case.

I came home and saw a new neurologist. I was sent for a vascular ultrasound, which came back mostly normal. I was then sent to a foot and ankle surgeon who did some kind of tapping test and mentioned tarsal tunnel syndrome. He later told me that it was not normal tarsal tunnel because I showed positive on the tapping test up to my knees and not just around the ankle. This was in January. I see both he and the neurologist again in March. The swelling and slight color change upon movement seem to be the missing pieces. Wearing a brace helps tremendously, as long as it is not too tight. It has not cured the swelling and pain but I feel more stable and there is less pain. Even my 30 minutes in the pool (with minimal ankle movement) leaves me sore and swollen for a few hours.

In the last month, I am noticing more pain (sharp and aching) in my hands and currently have what my doctor believes to be a pinched nerve in my neck. (Shoulders feel like they are hanging out of the socket, at times, and there are moments of pain radiating into my chest, upper back, and down to my thumb.) Lower back, hips, and knees always hurt, which makes me suspicious of arthritis but no one has mentioned it.

Well, this email is just as long as the first! Sorry about that . . . but now you have the whole story, I believe.

Hi ga29, Thanks for the validation on the wrist braces! So are you saying that your S1 joints (?) are causing your neuropathy? and so maybe P/T will help? Glad you got some answers and hope it helps you going forward. Helen