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    How much do you push your body when in an effort to fight for mobility you can’t control the nerve pain or the muscle spacticity and spasms?

    I’m living with chronic intense spine pain with nerve damage and muscle atrophy in my lower body. Just a few weeks ago I was in a wheelchair for eleven days straight and could not walk at all. I haven’t been able to do anything besides the bare basics of caring for myself and my pup. Yes, the bare basics. I’m not in a wheelchair right this minute but I cannot walk without my rollator or walker with my attached cane. It’s been that way for a long time now, years.

    Anyway, I’m trying to walk (via walker) and track my steps, push myself a little more each day.

    The pain, burning and numbness take over my body and I have to stop repeatedly to bend my spine forward and relieve the pain and pressure, ease the burning. It’s horrible and the pain sucks but still, I want my life back and I’m not going down without a whole lot more fighting (again). Yes, I’ve been living with chronic pain my entire adult life, so it’s been an ongoing battle for years.

    The problem I’m having right now and daily is: when I’m pushing for mobility and trying to save my lower body (mid spine to feet) from being permanently paralyzed I’m fighting nerve damage that only relieves with ice for hours (mid to low spine and bum and hips) but muscle spasms that only relieve with heat (legs/feet).

    Just exactly how much muscle spasms/spasticity is too much and how do I know if I’m pushing way too much or just not enough? I’m really not knowing and I know if I don’t keep fighting and just stay in whats comfortable and least painful I won’t be out of the wheelchair very long. Any tips, advice? I welcome them all please. This pain is making me a little bit nuts and I’m using ice and heat at the same time to combat the different parts and symptoms on my lower body. I’m exhausted and frustrated to say the least. #ChronicPain #FailedBackSurgery #Nervedamage #DDD #Osteoarthritis #spinestimulator #migratedleadwire #Exercise #Neuropathy #MuscleWasting #Tremors #numb #tingling #Burning #Spasticity #musclespasms #mobility #Fibromyalgia

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    Accomidations in chaos

    Accomidations in this chaos are few and far in between. I don't participate in any extra #chaos . Our home is one with a variety of thins already going on on a daily bases.... people struggling.
    We are a home it a fully disabled Army combat wounded veteran with the inability to work. So, you're talking... #intervert , #PTSD , extra #Depression because he is still able to work in his mind and told he can't, #TraumaticBrainInjury , #PhysicalMedium , #SleepApnea , #closterphobic (in certain situations), #HearingLoss ... and what other #Undiagnosed issues he had prior.. besides #temperment . To add to it... the oldest (teenager) in our home also has a variety of issues...#ADHD , #Merld , #GAD , #undiagnosedasd , #odd , #RaynoldsSyndrome , #mildDyslexia , #boarderlineBiploar ... #sensitive #empath
    Next, a seven year old. He is Super tall for his age and has tons of #growthspurts along with everything else. He is a #SensitiveEmpath with #PTSD and signs of #SPD (#SensoryProcessingDisorder ). He may also have #auditoryprocessing issues. He receives #OT , #St , and #SociaWork services.
    Next is a smart, stubborn, five year old; and a smart, overly active three year old. You are lucky if they keep their shoes on most the time anywhere. 💯🤪🤣
    With all the professional knowledge from my college years (associates degree) and learning from friends I have in the higher up professions of environmental control, Industrial Hygene, constitutional attorney... it also makes me not want to play along with all the chaos that occurs in our current world, let alone make my kids participate.
    Healthcare facilities are being able to break all laws, oaths, and rules they want currently because the ADA is doing nothing just as OSHA has been doing. Instead of helping prevent illness, they are spreading it more. They refused my 7yo this summer from a tick bite, instead of looking at his hip to see it if was #LymeDisease that required antibiotics. Then, I had to fight with them at ER showing my wide knowledge to get my child help.. stressing us out in the process. He was so #anxious the was tightly gripped on my arm as we wanted the room to get seen. He needed #antibiotics .
    Recently, my husband whom had a #spinesurgery last year was to be seen by his primary #NP . She refused a virtual appointment, and refused to see him in person without a mask 😷. He knows masks at these levels don't work for virual (#mocksuits #biochemicalsuits ), gets #clisterphobic , aren't going by #FederalPPEGuidlines , and already is having issues breathing (#musclespasms around his esophagus and #lockjaw ). He asked if they ever tried breathing through a pillow because it is how he will feel with a mask on if he here to wear one. (Plus. Some of those are put together in dirt.. and dipped in chemicals.) My husband was terminated of their care and not allowed to come back to #Bronson . When he got looking at our chart information... our WHOLE family was #terminatedofcare from #BronsonHealthSystem .



    Does anyone on here get muscle spasms? I get them in my lower back. And have any suggestions on what could help? I’ve already tried heat etc. #Pain #BackPain #ChronicPain #musclespasms



    I read a post earlier today and thought that’s me! Most evenings I’m so exhausted 😩 that I can barely make it to my bed but then there’s nights like tonight where nothing helps the pain is so bad I want to cry 😢 but once again there’s no tears left. I don’t know what to do with myself I need to sleep and to heal from today but I can’t get comfortable and when I do I jerk myself awake again. Sorry for the moan but sometimes it’s just that bad and I struggle with the grief of losing myself to this never ending cycle. #Painsomnia #fibropain #pregabalinwithdrawal #restlesslegs #musclespasms #exhaustion


    has anyone experienced jaw spasm that causing you to bite your tongue than some expressive dysphasia...? #Fibromyalgia #musclespasms

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    The Best Night of my Life

    I have the best little brother in the world! I haven't been to a concert since 2001! We went to see Tyler, the Creator, Blood Orange and Goldlink! Tyler is my FAVORITE artist!! I never thought I would ever get the chance to see one of his shows. I had the best time of my life!! As an EDSer it is hard to go out to big events like this. I haven't went to any type of music shows since being diagnosed with EDS and the other invisible diseases. I honestly didn't know it I could get through a show to that magnitude but I did! I am feeling the aftermath today! My body is very angry with me, yet I'm still on cloud NINE!! I got to see Tyler last night! It was worth it all!! I will never forget October 3rd 2019!! #EhlersDanlosSyndrome #LifeofanEDSerwomanofcolor #Concerts #musclespasms #Energy #PosturalOrthostaticTachycardiaSyndrome #Music #bestnightever


    If my health condition could talk it would say....

    Whatever you had planned today forget it cause I’m here to stay
    The meds you take will make you quake
    Unsteady you will always be but ha there’s nothing they can see.
    I’ll make you spasm jerk and fall
    With the dwp you hit a wall
    You’re fit for work their assessor says
    They don’t see you on bad days
    Bad days now outweigh the good
    Come the man with the black hood.
    #Depression #Anxiety #chronic fatigue #Hypertonia #musclespasms

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    Is anyone curious about using cannabis to help with their condition &/or making their meds?

    I have MS that wasn’t responsive to pharma. I had to learn how to create my meds so they would be effective. We are still very much in a recreational market until the science catches up. Support your endocannabinoid system! #musclespasms #Pain #Neuropathy #Cannabis #MedicalMarijuana #Marijuana #MultipleSclerosis #ChronicPain #AutoimmuneDisease


    Early on set osteoarthritis in my spine

    I loose feeling in my arms and legs one week, so much that I can injure myself unknowingly! Then, the next week I’ll endure lighting pain and never ending muscle spasms, that send me to the ground. I stretch daily and use THC and CBD creams to help with pain and inflammation. I cope, everyday. I’m grateful for the good days, and curse the bad days.
    Doctors just want to replace disks in my neck and lumbar....Hell no! As long as I’m walking, they ain’t cutting.
    How do you cope with the bad days?? #Osteoporosis #ChronicPain #musclespasms #DegenerativeDiscDisease