Illusive Diagnosis, Pain Increasing

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

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.

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.

Hi I think I have it! No you are not crazy, it is not all in your head, and you are not alone. You are a warrior and deserve to be joined by an army of warriors. And you just have been. Welcome to the war for truth and treatment for CRPS, in my humble opinion. (At just one of your conditions as I can see.)

First, let me outline your history as I understand it.

1. Where it so began: 1998: a viral, fungal, or protozoan infection, tick fever or something like it— hard to identify and even harder to cure lasting 6 months.
2. DX or mis-DX: Chronic Fatigue Syndrome due to the recovery cycle of infection and false positive of an anti-DNA test to match any foreign body within the system.
3. DX: Lupus after prolonged illness, TX with Plaquenil for 2yrs, stopped in 2yrs, DX reversed and changed (Rheum)
4. DX: Multi-connective Tissue Disorder - REVERSED (Rheum)
5. DX: Metatarsalagia SX: Big Toe Pain, progressive to remaining toes and ankle leading to instability when walking and increase TX: Ibuprofen, orthotic shoes (Pod)
6. DX: Muscular edema (dystrophy) with no injury PCD: MRI (Pod)
7. DX: Foraminal Stenosis at L5-L1 (mild) PCDs: EMG no, MRI of back (neuro)
8. DX: confirmed negs of Lupus PCD: BW, (rheum)
9. DX: Foraminal Stenosis (severe on lower left side but not related to feet) (Spinal Neuro)
10. UNREPORTED SIGNS AND SXS: Muscle spasms in lower legs, ankles, feet, arched, etc. full body jerks, uncontrollable. Strange, “popcorn” sensations throughout the body.
11. DX: CRPS Type 1 (mild? case?) ruled out Fibromyalgia PROC: Back ink (unknown type) offered relief to back Pain TX: Neurontin— responded with decrease in muscle spasms and popcorn sensations, referral to Mayo (PT - suggestion of CRPS and Pain Specialist)
12. Mayo: DX: Small and Large Peripheral Neuropathy (predominately on left side), A1C normal.
13. DX: not normal tarsal tunnel PROC: Vascular Ultrasound - nl (ankle and foot surgeon
14. Most recent: developed Pain in neck and hands: possible pinched nerve in neck? Growing progressively worse

Please read through this and let me know if this looks correct?

@jeanniem Concerning your history, I see a lot of different theories being pursed, but according to your signs and symptoms, only one or two trends in your history, peripheral nerve symptoms with subsequent central involvement.

What do I mean? Signs and symptoms after your initial 6 month illness:
Peripheral: left foot pain, left foot edema and atrophy, left ankle instability, popcorn sensations in left foot and ankle, developing into hands
Central and autonomic: muscle spasms - in feet, ankles, and lower legs, full body myoclonic jerks, including neck tension, popcorn sensations predominately left side

Additional diagnoses: Foraminal Stenosis at L5-L1, diabetes but controlled.

Now I’m going to give you diagnostic guidelines for CRPS (type one or two) that any provider (specialist or not) may use to DIAGNOSE CRPS at which time they can refer the patient to a neurologist, pain specialist, and/or BOTH for management and care.

It’s called the Budapest Criteria:
It requires NO MEDICAL TESTS.

Symptoms

A patient must have at least ONE SYMPTOM IN THREE OF THE FOLLOWING CATEGORIES:

1. SENSORY: hyper anesthesia (an abnormal increase in sensitivity) and/or allodynia (pain caused by usually non-painful stimuli);
2. VASOMOTOR: skin color changes or temperature and/or skin color changes between limbs;
3. Sudomotor/edema (swelling) and/or sweating changes and/or sweating differences between the limbs;
4. Motor/tropic: decreased range of motion and/or motor dysfunction (weakness, tremor, muscular spasm (dystonia)) and/or trophic changes (changes to the hair and/or nails and/or skin on the limb).

Signs

At the time of clinical examination, at lease one sign must be present in two or more of the following categories:

1. Sensory: hyperalgesia (to pinprick) and/or allodynia (to light touch) and/or deep somatic (physical) pressure and/or joint movement;
2. Vasomotor: temperature differences between the limbs and/or skin color changes between the limbs;
3. Sudomotor/edema: edema and/or sweating changes and/or sweating differences between the limbs;
4. Motor/tropic: decreased range of motion and/or motor dysfunction (i.e. weakness, tremor or muscle spasm) and/or tropic changes (hair and/or nail and/or skin changes).

These guidelines for diagnosing CRPS (a disease that currently has no medical tests for it, regardless of what any pain specialist, insurance company, or neurologist says in the States) were adopted by the IASP or International Association for the Study of Pain at the Conference in 2004, superseding guidelines which had been in places for the previous decade. Since their conference took place in Budapest, they were named the Budapest Criteria.

IASP - iasp-pain.org
http://Www.blb chronic pain.co.uk
http://Www.Rsds.org

You did a much better job of summarizing what I am experiencing than I did! The only adaptations or clarifications I would make are

1) None of my other doctors knew about the Chronic Fatigue Diagnosis. I moved twice between 1998-2000. I mostly had symptoms of fatigue, swelling, and light hives during that time. I had sun sensitivity (more blotchy than a rash). I would get swelling in my feet and hands but usually only one at a time. For 8 years I was dismissed by multiple doctors. I did not receive the +RNA test until 8 years after the CFS dx.

2) While I have had some nerve symptoms off and on since the beginning of this journey (popcorn, pins & needles), they were mostly in my hands and arms. I don't have to walk on them and it was transient so I rarely mentioned it. Symptoms in my left foot did not begin until 18 years after the CFS dx and 10 years after the Lupus dx (that was later reversed).

3) I was originally dx with moderate foraminal stenosis on both sides (MRI). The spine doc did some old fashioned x-rays and said that the foraminal stenosis was actually severe when I am standing. I assume it has always been severe when standing but I didn't stand through my MRI. 🙂

4) Back injection was a steroid injection at L5-S1.

5) Additional diagnosis of MGUS (my light chains are high). Neuro says this is unrelated.

CRPS was originally mentioned by my PT. Pain doc said it was a possibility upon questioning. However, both my hematologist and foot and ankle surgeon mentioned CRSP. In fact, the latter wrote in his note that he is "very concerned" there are signs of CRPS. He told me that, because of this, surgery would be a last resort. I do meet criteria in all 4 arenas.

I did a bit of research between clients today and saw that there is some early research suggesting that CFS may be connected with small fiber neuropathy. I found that interesting.

More than anything, I just want to know what I am dealing with enough to set up a treatment regimen. Reading the updated info on CFS actually brought me a little peace. For years I have been frustrated that if I overdo a workout or stress I pay for it for days. There is no endorphin rush - only nausea and shakiness that lasts for hours. I have always felt like this made me a wimp. Turns out, it may be hangover from the CFS. The one physical activity I have consistently enjoyed is dance - probably because of the go and stop nature of the social activity. This latest set of symptoms has interfered with that and I miss it.

In many ways I could have written your letter. Don't feel like a hypochondriac. We all, at times, feel like our body is going bonkers. Just tossing a thought out to you if fibromyalgia has been considered. There are some days that it feels like no matter where I touch I have pain, be it feet to head.

It sounds like you have your diagnoses worked out then but if you have CRPS at all, be very careful having surgery or any type. Surgery, needles, injections injuries of any type can force the CRPS to spread to other sites of them body and that include stress from activity including dance.

CRPS can get worse just from activity? That is not encouraging news. 🙁

CRPS is caused by Windup from the brain to the peripheral and affected nerves in the central nervous system (I.e, in the back and along the spine and shoulder) if it progresses.
If you have TYPE I, you have a chance of remission but your PT must treat you Specifically for CRPS. If you have type two, remission is unlikely but you need to stay mobile as much as you can.
The issue is that mobility can cause flares but lack of mobility will lead to increase in wasting disease and more and mobility.
I am not saying that anybody in particular may have this disease. I do though. I am in this catch 22 situation and it’s not fun.