Edssucks

I really need some tips...light exercises, good heating pads, whatever can help me live my daily life. I have very limited mobility & use a walker, and I am seeing a pain management doctor, but need to switch because he has stopped listening to me. He comes in the room with my prescriptions already printed, signs them while I'm talking, and sends me on my way. The pain just keeps getting worse. Does anyone have tips to help me get at least a little relief? #EhlersDanlosSyndrome #ChronicPain #Fibromyalgia   #Disability   #HypermobileTypeEDS   #EDSers #pleasehelp #PainManagement #Edssucks

I'm like no I don't feel like it was worth it. No matter what I did or got done. (A spiritual activity today, callbacks on those from our door to door ministry--which was my MiL's calls not even mine I don't have any. Plus out to eat, then Dollar Tree. I walked w/rollator & knee & hip braces today). Still was a ton of pain when I got done.
#ChronicPain #Edssucks #ChronicIllness

I've been doing it all day. Watching my husband play Tales of Zestiria helped to distract myself. It's a lot today, I don't feel like this is my body. It's not quite a dissociation. I feel like a different persona I guess bc of how much pain I'm in.
#CheckInWithMe
#ChronicIllnessEDS
#Edssucks
#ChronicPain

Here's my experience today: Phasing out a lot bc of pain and tears for no reason. Husband is concerned. Tried to explain how I feel and about phasing out. I don't feel like myself but I don't have multiple personality or anything like that. Not complete dissociate or anything like that. Just meh. It just don't feel like my body. I still don't feel like myself. (like a different persona?). Watched him play some Tales of Zestiria to distract myself. #ChronicPain #Edssucks

At this point I’m beyond frustrated. My knee is popping, catching, clicking, swelling, hurting (both dull and sharp, just depends on the time), hyperextends and gives out on me. I have seen my primary care doctor, a PA at Ortho who did an X-ray and ordered pt. PT wants me in an immobilizer brace to stop me from falling so much, brace needs to be ordered by ortho dr. So back to ortho I go and see a doctor, who agrees that there’s something wrong and orders an MRI. No biggie, preliminary results are showing that the only thing wrong is just some free fluid. Still also haven’t gotten the brace ordered either. 🤦‍♀️I just feel like I’m getting runaround about getting me fixed. Things are breaking too fast to keep up with and the only advocate I have is me. #EhlersDanlosSyndrome #Edssucks #ChronicIllnessEDS #HEDS #painsucks #POTS #PosturalOrthostaticTachycardiaSyndrome #JointHypermobilitySyndrome #HypermobileEDS

This hospital stay has been such a rollercoaster ride. I was having chest pain and it turned out it was because of gastrparesis. That then caused an illeus which also then caused fluids to be aspirated into my lungs and caused ground glass nodules. I also had really low blood levels which I required a blood transfusion for. They are still low. I also had low calcium magnesium and potassium.Then my blood pressure has been low so they had to give me fluid boulises. I’ve been so exhausted and surprisingly not hungry for having not eaten in so long!

Finally received my EDS hyper-mobility diagnosis waiting to get into the cardiologist specialized with EDS to look into a POTS diagnosis. The anxiety is agonizing, so many meltdowns and inconsistency I don’t know what to do. My service dog is the only thing keeping me together right now. #ServiceDog #AutismMeltdowns #AnxietyOverload #Edssucks #Everythinghurts #POTS ?

Why can everyone else see the heavy ness of the illness except my family. I had blood clots in my lungs and it was nothing! I had two emergency surgeries on my back and it’s nothing! What am I supposed to do? #EDS #Edssucks #POTS #Backsurgery