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Anyone else experience this?

I was wondering if anyone else has flare-up…cycles? If so, do you know why?
For me, I have GI symptoms, muscle and joint symptoms, and neurological symptoms associated with my condition. When I begin a flare up, the GI symptoms flare at once, then once that flare ends, it triggers a joint flare, then when that one ends, it triggers the neuro flare up. Like, each category has to flare before the whole thing is over. Is there a reason? #autoimmune #chronic #Seizure #GastrointestinalDiscomfort #Jointpain #Inflammation

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University Day

It's off to university today for me. I'm studying for a part time masters while also working almost full time in the NHS. Uni days are always really enjoyable but tiring. Before my diagnosis I wouldn't have appreciated how much something as simple as being somewhere different would affect my condition. This is my third day at Uni and the biggest problem is my back. I don't have my specialist desk chair or my sit stand desk at Uni. 4 days in a normal chair and my back is feeling horrible. I also notice over the 3 days that my inflammation markers go up resulting in swelling to my hands and feet. Today we have a presentation assessment. I'm just hoping that my ILO is OK and I don't start coughing during it.
It's not all bad though, I get to spend 3 days with some lovely people and I've discovered even at 51 there's still lots to learn. This evening and tomorrow it will be important to be kind to myself. I'll need time to rest my mind and my body.
#angelamarielifecoaching
#psorioticarthritis
#induciablelarygealobstruction
#livelifetothefull
#unidays
#ChronicPain
#backpack
#Inflammation
#Bekindtoyourself

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Chronic adventures

Well, I guess my b12 is super low. Why? I have no good reason. Wait, AND Glossitis!? Just another day in my wacky world of chronic adventures!! Waiting for the last test to come back, so this waiting is done. For now. Yah chronic sh*t! #forreal #ChronicPain #ChronicIllness #Erythromelalgia #RareDisease #Colectomy #neuromodulators #Arthritis #IBS #constipation #Migraine #Disability #MentalHealth #Depression #Anxiety #PeripheralNeuropathy #Undiagnosed #raynauds #Hypertension #GERD #Heartburn #glossitis #Inflammation

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Diagnosis

The Neurologist found Neuropathy in my legs and feet. Next, blood testing. I've gotten a few tests back, some were sent out. A few elevated proteins, positive ANA, high sed rate, all pointing to inflammation. His best guess was a connective tissue disease and not MS. He also thought I might have secondary Erythromelalgia. (No surprise there)

I just hope they find out what's causing my neuropathy. My feet are worse than I thought. Kind of scary..

I started out on gabapentin, and it has helped with the pain, which is good news :-) I know there's so much going on in the world and I continue to keep Ukraine, its people, in my thoughts and prayers.

Soon I add to PT , steroid injections in my back and chiropractor visits for Kyposis, etc. Not really sure how this will pan out, especially the 3 hour round trip drive :S

Guess I'll stop bitchn and just do my best. Kinda nervous though! #PeripheralNeuropathy #ukraine #peace #Anxiety #PTSD #Depression #MentalHealth #RareDisease #ChronicPain #ChronicIllness #Erythromelalgia #CheckInWithMe #MightyPets #Migraine #Upallnight #Neuropathy #DistractMe #SpoonieHacks #Trauma #Vasculitis #Ana #kyposis #Arthritis #Inflammation

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Virus time-Yay

Chills, sweating, feel like I should be in the hospital! Ahh! All over aching and inflammation. Any suggestions that help you feel better? Hydrating, resting, doing all that. Thanks#RareDisease #ChronicPain #Arthritis #Depression #Disability #Inflammation #PeripheralNeuropathy #Virus #sick #Migraine #CheckInWithMe #Fatigue #Undiagnosed #MentalHealth

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Going to see a Neurologist, any advice?

At the end of the month I see a Neurologist, for many reasons. To name a few recent symptoms.. optical neuritis, tingling/numbness/loss of sensation, and bladder incontinence at times. I'm really scared, I mean I knew this was coming but I'm worried. Not scared of actual visit...just any bad results.

Any advice when visiting this doctor? Thanks in advance. #ChronicPain #Undiagnosed #RareDisease #Arthritis #Migraines #AutoimmuneDisease #Anxiety #OpticNeuritis #Neuropathy #PeripheralNeuropathy #raynauds #ChronicIllness #Inflammation #BrainFog #droppingeverything #donatingmybodytoscience

18 comments
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Nose Cauterization and quite tired of this crap.

Just had a side of my nose cauterized the other day. Hopefully it will grow new skin that won't be inflamed. Tomorrow I have to travel for appointments again, I don't have the energy or the heart. Tired of the upkeep, my body is showing it too. Like I had a month off, now been in a month and Im into burnout zone. My brain is fried. Next month will make a long trip to a Neurologist. Just want to postpone everything....like Adele.

I'm exhausted, I hurt, I need to shower and play along but Im so tired of this crap.

I just got caught up on laundry, now Ive worn myself out for tomorrow. Sitting here, just dreading it.

I don't want it to get to me but it does! #Depression #Anxiety #RareDisease #ChronicPain #Arthritis #CPTSD #Inflammation #Migraine #Fatigue #epsteinbarr #cystitis #Neuropathy #sinusitis #Disability #hatetodrive #someoneputmetobed

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What's up with this chronic nose inflammation?

Hey all, Ive been having inner nose inflammation for at least 3 months, its worse in the right. I do have chronic sinus issues,but never this. You just look up my nose and the tissue is red. It hurts and has caused nosebleeds at times. I've been to the ENT and they gave me a steroid nasal rinse and ointment. It helped some but didn't go away. I was kinda peeved they weren't trying antibiotics, which i know...i know all about them. It feels raw in these areas and can be pretty painful, cause headaches. I have to go back but am not happy with the treatment plan as I cannot take oral steroids, but that is all they offered. Not sure what to do..just really lost and frustrated. I've had nasal issues over half my life and never had this. I know its not covid, ive been tested. Im on an allergy shot, i take meds, nose rinses, flonase etc. I don't get it at all and not getting much help.#chronicdisease #ChronicIllness #SinusInfection #ent #Inflammation #RareDisease #ChronicPain #nosebleed #Undiagnosed #Upallnight #AutoimmuneDisorder #AutoimmuneDisease #Anxiety #Fibromyalgia #Migraine #nosepain

10 comments
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I'm new here!

Hi, my name is mel12. I’m new to The Mighty and look forward to sharing my story.

#MightyTogether

#Migraine

#Fibromyalgia

#PTSD

#Grief #Dysautonomia #IrritableBowelSyndromeIBS #Inflammation #RaynaudsDisease #Asthma #chronic lumbar back pain it all started when i fell at work and hurt my back i had to get surgery because nothing else helped and a few weeks later i was diagnosed with lung cancer and went through a lobectomy. i thought i was on the road to recovery when i developed a tumor in my throat and had to have that removed then i lost my mother unexpectedly and my father two months after not to say it all happened within one year. it had to be the worse year i had but instead of getting better i was getting worse and no-one could figure out what i had. it was just recently i was diagnosed with pots syndrome and all the other things on my list meanwhile i believe I've seen every specialist you could think of. My flair ups are debilitating and i am at a loss the quality of life stinks but I'm staying positive believing this to will pass. i am seeking a group to help get through this as you may all know it is very difficult and most people don't understand it.

so that's my short version of my story.

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