Many of us experience symptoms that are outside of the Classic box and so an unimaginable journey begins.
I still laugh/inner smirk with mixed emotions whenever I recall the initial GP saying to me "Sjogren's, dry mouth and eyes. You can live a normal productive life". I live an adaptive life, often in various states of 'wonder'. When faced with a challenge (doing something that was "normal previously), how to find a work around solution; or ask for help (that works too..lol).
I have had those odd sensations (indoors..so no bugs around) of something like small bugs biting my legs. Lace patterns up my arms.
Days when it felt as those my feet had been dragged across concrete and were left raw.. so hobbled about as best I could.
Tuning fork vibrations in my arm.. like hitting your funny bone. Chuckling as I pondered what color nail polish goes with purple digits?
Electric-like nauseous waves course through my brain from slight sounds.
Our bodies really are amazing..lol
Dec. 21st was the 2nd surgery had for DH with his neuropathy in legs (Cardrio/Diabetes). 2nd one was a charm. 1st CardioVascular Dr. would not do surgery as he felt benefit did not outweigh risk. 2nd opinion --> two surgeries and DH is now pain free and walking so much better. We feel blessed. We had been told he could lose his left foot/leg. The surgeon who helped DH said to me, "You have Sjogrens that affects veins and nerves, I want to see you". I almost fell down. He is outside the box.. Wow. I had not said anything to him at all .. just that I had Sjogrens and was looking for local GP.
It was necessary for me to stop methotrexate for vaccinations, so symptoms presented. A dark reminder of the disease; and a reality check of how well the medications manage disease activity/inflammation ---> damage. Vaccinations were to be spaced so it was extended and so into the pit of a systemic flare. But, I have had worse and then there is always the vivid remembrance of life pre-Dx and any treatment. Then the confusion with treatment as neurological symptoms ran havoc, escalating. Until, I was seen and treated at PennMed and symptoms became manageable. The Chief of Rheum @ RWJ lamented I was in the small population which presents with neuro symptoms first. Personally, I think the sicca ones were there, however, the neuro were so debilitating that they were the ones that drove me to seek medical care. For myself when I was bouncing off walls.. dryness was not a priority.
Here is a recent study whose .."Demographic and clinical data were compared between patient groups with and without neurological manifestations, and across patient groups with peripheral nervous system (PNS) manifestations, central nervous system (CNS)manifestations and no neurological manifestations.
Epidemiology of neurological manifestations in Sjögren's syndrome:data from the French ASSESS Cohort http://rmdopen.bmj.com/content/2/1/e000179.full.pdf+html
"There are many possible causes of small fiber neuropathy. The most common cause is diabetes or glucose intolerance. Other possible causes include hypothyroidism, Sjögren's syndrome, Lupus, vasculitis, sarcoidosis, nutritional deficiency, Celiac disease, Lyme disease, HIV, Fabry disease, amyloidosis and alcoholism."
Small fiber neuropathy: A burning problem
Under Key Points/Causes: Causes and associated conditions can be found in over 50% of cases. These include glucose dysmetabolism, connective tissue diseases, sarcoidosis, dysthyroidism, vitamin B12 deficiency, paraproteinemia, human immunodeficiency virus infection, celiac disease, neurotoxic drug exposure, and paraneoplastic syndrome. http://www.mdedge.com/ccjm/article/95083/diabetes/small-fiber-neuropathy-burning-problem (cont')
Neurologic complications
A PRIMER ON THE NEUROLOGICAL COMPLICATIONS OF SJÖGREN'S
By Julius Birnbaum, MD
Johns Hopkins Neurology-Rheumatology Clinic
https://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/
IMAGING SIGNATURES OF ALTERED BRAIN RESPONSES IN SMALL-FIBER NEUROPATHY: REDUCED FUNCTIONAL
CONNECTIVITY OF THE LIMBIC SYSTEM AFTER PERIPHERAL NERVE DEGENERATION
Paul-Chen Hsieh, Ming-Tsung Tseng, Chi-Chao Chao, Yea-Huey Lin, Wen-Yih I. Tseng, Kuan-Hong Liu, Ming-Chang Chiang, Sung-Tsang Hsieh
Supplementary materials http://download.lww.com/wolterskluwer_vitalstream_com/PermaLink/PAIN/A/PAIN_2015_02_09_CHIANG_PAIN-D-14-12890_SDC1.pdf
Diagnosis and treatment of pain in small-fiber neuropathy.
Hovaguimian A1, Gibbons CH.
Center for Autonomic and Peripheral Nerve Disorders, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA 02134, USA.
Abstract
Small-fiber neuropathy manifests in a variety of different diseases and often results in symptoms of burning pain, shooting pain, allodynia, and hyperesthesia. Diagnosis of small-fiber neuropathy is determined primarily by the history and physical exam, but functional neurophysiologic testing and skin biopsy evaluation of intraepidermal nerve-fiber density can provide diagnostic confirmation. Management of small-fiber neuropathy depends on the underlying etiology with concurrent treatment of associated neuropathic pain. A variety of recent guidelines proposes the use of antidepressants, anticonvulsants, opioids, topical therapies, and nonpharmacologic treatments as part of the overall management of neuropathic pain. Unfortunately, little data about the treatment of pain specifically in small-fiber neuropathy exist because most studies combine mixed neuropathic pain syndromes in the analysis. Additional studies targeting the treatment of pain in small-fiber neuropathy are needed to guide decision making.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/
Neurologist appt is coming up. But, I am curious to meet up DHs' doctor at surgery follow-up.
I am hoping that those with experience with this area will weigh in with information and guidance.
Always wishing everyone the best.. sometimes we take giant steps, other times baby steps.
Dear QD, Thanks so much for this valuable attention to the neurological aspects of our Immune Disorders.
I am rendered disabled by the Peripheral Neuropathy in my legs. Most people just don't get what's involved. It isn't just that the nerves don't work, but that they send garbled messages (if any messages at all) so I am dealing with horrifying sensations. Just stepping on a pebble can instantly send my brain the message that I'm stepping off a cliff.
Of COURSE I know I'm not stepping off a cliff, but I'm talking about the instananeous unconscious communication that goes on endlessly. It isn't just hard to walk, I may stagger sideways, with my feet crossing, for example. Thank goodness I have braces to help me now.
The Small Fiber neuropathy is on my mind daily now. BURNING, STINGING, STABBING PAINS and ITCHING in my scalp, face eyes, ears, lips, tongue, mouth neck, arms, hands and finger, palms of the hands. The itching is like the sting of a terrible mosquito bite, and is the worst part. Right now the medication I'm taking is doing little to reduce this 'discomfort' (we learn from our doctors to 'say discomfort, not pain', sigh). But soon I will ask for something, either more Depakote or to go back on some dosage of the Gabapentin.
Since I don't have an Immune System that produces autoantibodies, and is in fact deficient, I don't have the option of Methotrexate or other Immunosuppressants.... I am dealing with the misery of SFN right now, and hoping to find relief soon.
If 'all I had' were "dry eyes and dry mouth" I would be so happy. But, alas, that is not my case. I am trying very hard to stop 'beating myself up' because I'm not doing better, I'm not all well, I'm not chipper and cheerful.
The hardest thing in the world is 'doing nothing'. I have severe arthritis in my hands but I can still text here, thank goodness.
Hugs, Elaine
hang in there Elaine......I feel for you! I have chronic pain and am in flare right now, get strange neuro stuff, and I was just trying to explain via email to a nurse covering while my doctor is gone and its so hard to find concise words to convey how messed up these sort of conditions are without feeling judged ..............