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Illusive Diagnosis, Pain Increasing
Bones, Joints & Muscles | Last Active: Oct 6 1:44am | Replies (43)Comment receiving replies
@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
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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.