small fiber neuropathy

I am glad to join this group as no one understands the bond that I have with my two dogs. I had an atypical case of guillian barre where I lost became weaker and weaker over the course six weeks to the point where I could not get up, walk, or sit up unassisted. One of my dogs was unable to go up the stairs. In the last few weeks before I went into the hospital I spent most of my time upstairs in my bedroom and the bath across the hall. I missed my dogs terribly. They didn’t see me differently I was still the person who gave them snuggles and they would still light up every time they saw me. They were the only ones who could make me forget the horror I was going through. I would gather all of the strength and energy I had to scoot down the stairs to see them. They brought me more love and comfort then anything else could at the time. For reference I have two cute gentle and lovable giant dogs so carrying them up the stairs was not an option. They continued to bring me joy and happiness post hospital stay and throughout my journey to recovery. They even learned to walk while I “chased” them trying to get their toy. The thing about dogs is that no matter what state you are in they will always see you as their person. I don’t think any of my family truly understands how much they helped me get to where I am today or how much they both truly mean to me. They kept me going when it would have been easy to give up. Even now while I have mostly recovered from my guillian barre they bring a smile to my face when I have bad days with my health from my other illnesses. #womansbestfriends #GuillainBarreSyndrome #Dysautonomia #Gastroparesis #SmallFiberNeuropathy

Hi, my name is PancakeSalad. I've been diagnosed with #EhlersDanlosSyndrome #EDS #Ehlers #EhlersDanlos #HEDS #SmallFiberNeuropathy #SFN #MCAS #MastCellActivationDisorder

Just wanted to introduce myself! I’m Jody, a fellow #Potsie I am 56 yo, however I feel so much older as I have a total of 15 dx chronic diseases. Unfortunately, a little more than 2 years ago, I was fainting just a little too much (lol… 🤣), as well as having "gray outs", and my wonderful doctor told me that I could no longer get behind the wheel of a car!! It’s really nice to have to depend on your 85 yo mom to drive you around (who we are not sure if she should/should not be driving distances & freeways) to doctor’s appointments, etc.
#livinglifeinafishbowl #PosturalOrthostaticTachycardiaSyndrome #saltlick #Dysautonomia #SmallFiberNeuropathy #MastCellActivationDisorder #Gastroparesis #EhlersDanlosSyndrome #Subluxations #dislocations #Fibromyalgia #ChronicMigraines #ChronicNausea #ChronicDiarrhea #chronicconstipation #MyalgicEncephalomyelitisChronicFatigueSyndrome #Osteoarthritis #RheumatoidArthritis #Facetarthritis #ChronicPain #Depression #Lonliness #bored #icantpeople

I see a therapist to help me with chronic pain management related to erythromelalgia, peripheral neuropathy, and crps. My latest "assignment" is to keep track of how I feel by putting a number to it. (I know, I know.) But then track what I can and can't do with pain at that level. Then, I log my physical and emotional response.

The idea is to get my body accustomed to the idea that I can do things, and it will be safe. Also, it lets me see what I can do and when. It's like exposure therapy. The more you expose your mind and body to certain activities, you won't be too afraid to try. Yes, exposure therapy has plenty of its own issues.

I've been doing a form of this record keeping on my own for years. But in the past few days, I've pushed myself just to see. The verdict?

I have a pretty solid understanding of my body pretty well, and I know what I can do and when. Even so, it's only been a few days. Maybe it'll be more effective with time. I'm committed to giving this a fair and open-minded effort. We'll see how it turns out. Not every form of therapy is right for every person, and no therapy works magic.

#Erythromelalgia #ChronicPain #ChronicIllness #Therapy #PeripheralNeuropathy #SmallFiberNeuropathy #ComplexRegionalPainSyndrome #MightyTogether #CheerMeOn

The month of May is Erythromelalgia Awareness Month. My illness is such a rare disease that I didn't even remember we had an awareness month!

Thankfully, Erythromelalgia Warriors is out there helping people understand what a dreadful disorder this is. They have been a true source of encouragement to me over the years. Just knowing that you're not alone and that you're not the only one is a source of strength.

#Erythromelalgia #ChronicPain #ChronicIllness #RareDisease #MightyTogether #SmallFiberNeuropathy #PeripheralNeuropathy

Chronic illness when it brings chronic pain can cloud your thinking. And then when you add loneliness to the equation, it really compounds things. At least it does for me.

The constant -- and I mean constant -- pain is exhausting. The fatigue affects my thinking and my body. The erythromelalgia flares create burning on the inside of my body. Can you imagine your body being on fire every day, several times a day in your feet, hands, ears, face? Then when it happens around 1:00 AM almost every night, that's not fun.

All that breaks down my normal "defenses" and makes dealing with ordinary life issues extremely difficult. For me, it brings a lot of regrets,

The pain in my legs has prevented me from getting out of the house this week. My wife is away on business of a week, so it's just me and my cat. Thank God because without her, I might not make it.

All of this has increased my anxiety and depression. And yes. I'm taking my meds and using my strategies. This is just one of these times.

I'm not a threat to myself. I'm in no immediate harm. I'm just having a hard time tonight. I might want to eat some ice cream.

If anyone is out there, I'd appreciate some human interaction. Thank you.

#ChronicIllness #ChronicPain #RareDisease #Erythromelalgia #Suicide #SuicidalIdeation #SmallFiberNeuropathy #PeripheralNeuropathy #Anxiety #Depression

I watch a lot of sports. It's the NBA playoffs tonight. Sometimes, when I see all the running and jumping, I can feel the pain in my own legs and feet. It can even cause an erythromelalgia flare or peripheral neuropathy spike. It triggered an EM flare tonight. The weather front and high winds are the causes of the neuropathic spike. So, there's that. The mind-body connection is remarkable.

#Erythromelalgia #ChronicPain #ChronicIllness #PeripheralNeuropathy #SmallFiberNeuropathy #DistractMe #MightyTogether #Insomnia #RareDisease #MentalHealth #Selfcare

My chronic pain is always there, but it is very fussy about the weather. For me, erythromelalgia is extremely sensitive to temperature. 70 degrees F causes an immediate flare, but flares happen at lower temps too.

However, cooler weather causes spikes with my small fiber neuropathy.

Then, there's barometric pressure. Anything above 30 inches of Mercury (~1016 millibars) causes neuropathic spikes. Often to the point of tears and complete inability of walking. Rapid changes in barometric have a similar effect.

I could go on, but you get the idea. How does the weather affect you?

#ChronicPain #ChronicIllness #Erythromelalgia #Fibromyalgia #SmallFiberNeuropathy #PeripheralNeuropathy #Weather

Chronic pain is not just feeling bad all the time, and chronic fatigue is not just being tired a lot.

It sometimes feels like my life is nothing but finding an occasional respite between bouts of chronic pain.

Erythromelalgia flare to small fiber neuropathy spike to headache to an EM flare in a different part of my body and on and on and on.

I've been exhausted all weekend. More than usual. It could be because my "normal" levels have been higher with less "down time" between spikes and flares.

On top of all that, I've had a headache. Not a migraine like I often get. This has been a very sharp pain in the back of my head.

The constant high levels of pain drain all the energy out of my body. Does this happen to you? How do you handle it?

#ChronicPain #ChronicIllness #Migraine #Headache #ChronicFatigue #SmallFiberNeuropathy #PeripheralNeuropathy #Erythromelalgia #ComplexRegionalPainSyndrome