For all those years that people told me my pain was in my head or that I was exaggerating it, YOU HAVE BEEN PROVEN WRONG.
I was diagnosed today with Small Fiber Neuropathy.Small fiber neuropathy is a condition characterized by severe pain attacks that typically begin in the feet or hands. As a person ages, the pain attacks can affect other regions. Some people initially experience a more generalized, whole-body pain.
- Small fiber sensory neuropathy (SFSN) is a disorder in which only the small sensory cutaneous nerves are affected. The majority of patients experience sensory disturbances that start in the feet and progress upwards.
- A small percentage of patients with SFSN experience sub-acute onset sensory disturbances diffusely over the whole body, including the trunk and sometimes even the face. These patients have non-length-dependent SFSN and almost all cases are idiopathic.
The symptoms of small fiber sensory neuropathy
- are primarily sensory in nature and include unusual sensations such as pins-and-needles, pricks, tingling and numbness.
- Some patients may experience burning pain or coldness and electric shock-like brief painful sensations. In most patients, these symptoms start in the feet and progress upwards. In advanced cases, it may involve the hands. (I have both feet and hands)
- Sometimes it hurts to hold hands or to touch rough objects--many patients have to wear very soft clothing because the texture of the clothing can hurt. (this is me)
- Symptoms of small fiber neuropathy include numbness and annoying or painful spontaneous sensations, called paresthesias, that are variably described as tingling, stinging, burning, freezing, itching, aching, pulling, squeezing, or electric shock-like in character. Innocuous stimuli can provoke unpleasant sensations, called dysesthesias, as when clothes feel like sandpaper against the skin, the hands are hypersensitive to touch, and pressure from shoes or socks causes severe pain. These symptoms can occur anywhere in the body, including the arms, legs, torso, face, or even the mouth. (Walk et al, 2003; Lauria et al. 2005)
- Small fiber neuropathy is a condition characterized by severe pain attacks that typically begin in the feet or hands. As a person ages, the pain attacks can affect other regions. Some people initially experience a more generalized, whole-body pain. The attacks usually consist of pain described as stabbing or burning, or abnormal skin sensations such as tingling or itchiness. In some individuals, the pain is more severe during times of rest or at night. The signs and symptoms of small fiber neuropathy usually begin in adolescence to mid-adulthood.
- Individuals with small fiber neuropathy cannot feel pain that is concentrated in a very small area, such as the prick of a pin. However, they have an increased sensitivity to pain in general (hyperalgesia) and experience pain from stimulation that typically does not cause pain (hypoesthesia). People affected with this condition may also have a reduced ability to differentiate between hot and cold. However, in some individuals, the pain attacks are provoked by cold or warm triggers.
- Some affected individuals have urinary or bowel problems, episodes of rapid heartbeat (palpitations), dry eyes or mouth, or abnormal sweating. They can also experience a sharp drop in blood pressure upon standing (orthostatic hypotension), which can cause dizziness, blurred vision, or fainting.
Small fiber neuropathy is considered a form of peripheral neuropathy because it affects the peripheral nervous system, which connects the brain and spinal cord to muscles and to cells that detect sensations such as touch, smell, and pain.
Diagnosis of SFSN is based on history, clinical examination and supporting laboratory investigations. Electromyography and nerve conduction studies are done to eliminate involvement of motor and large sensory nerve fibers. Skin biopsies are used to confirm loss of cutaneous nerve innervation. Nerve and muscle biopsies are rarely needed.
A skin biopsy is how they found out I have it.
Treatment of SFSN depends on the underlying etiology. Painful sensory paresthesias can be treated with anti-seizure medications, antidepressants, or analgesics including opiate drugs.
(I am currently on several kinds of medication, and was told that I may eventually need shots for the pain. I will also be continuing physical therapy--probably on/off for the rest of my life.)
I was also diagnosed as having a low TSH (thyroid hormone) level. We are still in testing to see if my T3 and T4 are affected, or if a medication is causing it.
I honestly wish I'd known this back when people like my ex-fiance were treating me like I was making my pain up or imagining it--CLEARLY, I WAS NOT. This diagnosis--while [literally] painful--gives me more peace than you can imagine, because I finally understand why I've been feeling the way that I have for years.... Why it hurts to let someone hold my hand, why it hurts to be hugged, why it hurts randomly in every muscle and fiber, why I'm always getting sick, why my body feels like a thousand burning zombie spiders are crawling around...I finally have answers and PROOF that I wasn't making it up and I wasn't imagining it--and that feels great.
And if my ex-fiance ever reads this: I hope you burn for everything you did to me and how you treated me. I WAS FUCKING RIGHT, you pathetic piece of shit.