I'm new here!
Hi, my name is JuliKa4. I've been diagnosed with
I really hesitate to make this post because I am not sure what help is available but it’s 1am and I still can’t sleep and I getting quite desperate.
I have a bad habit of not seeking medical help promptly because of doubts any thing can be done. Twice I have ignored very small black specks on my face only to have them diagnosed as skin cancers requiring significant surgery. This has resulted in rather obvious scars.
In November I didn’t ignore symptoms in my leg, mainly because the pain was insane. I was diagnosed with acute compartment syndrome and was 8 hours away from having my leg amputated.
Now I am being kept awake most nights with shooting pain going down on the leg that was injured. I have tonight booked an appointment for the day I get back to Australia. I have no experience with nerve pain and I am hoping someone can give me wisdom on its treatment and ideally some hope that this is something that can be treated and not something I will have to put up with on a long basis.
I welcome any feedback. Thank you.
All/the vast majority of my posts here are about hairwashing. This is closely related to that & is about having a bath. How many times have people told you that baths are great? Relaxing, the heat helps the pain, etc?
Well, I just feel like a total freakshow, because for me & my fibro, it doesn't help at all. In fact, it's painful. Submerging myself under the water, it's like I get signals from every nerve in my back screaming "nope something's wrong. Alert, Something Is Wrong!"
I mean, wtf is that? Please say that at least person knows what I mean.
#Fibromyalgia #ChronicPain #ChronicIllness #nervepain
I’m finally getting the long suggested by docs but never approved by past insurance physical therapy in water. A first time experience with, long time needing and desired, hydrotherapy for me! It’s a big positive, filled with hope.
Yes, I’ve had physical therapy a few times over the years. But now, my body is in so much pain from nerve issues with extreme pain, burning and numbing in so much of the body. They feel like they are inflammed all of the time with constant internal vibrating tremors. It makes it very hard (near impossible) to exercise enough to stengthen whats left of my lower body. I hurt myself repeatedly trying to exercise.
I will be having therapy in a Hydroworx tank with adjustable temperature, thank god, cause hot water is excruciating now.
The tank has a treadmill, removable seat and grab bars for holding onto. A bit of anxiety inside with a whole bunch of gratefulness and excitement that I’m finally getting to access it along with the security of exercising with a therapist right there. I keep thinking, I really hope it cools and calms these constantly inflamed, burning nerves. I know, it’s a little much to hope for but as it is now, when the heat has me suffering real bad, sometimes I get into a cool shower and just sit there until it lowers my body temperature a bit and it feels better to my body for awhile. Hopefully, the tank will do that too along with some badly needed exercise strengthening and endurance. I’m excited! Thank you to my neurologist! Wish me luck folks, because I need it, lol 😂 #ChronicPain #hydroworx #nervepain #Undiagnosed #PhysicalTherapy
Can anyone tell me how long it took you to get into or get on the appointment list for dysautonomia testing? I’m being told it’s a 6 month to 1 year wait minimum if I’m willing & able to drive 4 hours away to Chicago. It’s 1-2 year wait if willing to drive to Minnesota (several hundred miles away and 2 states over). Any other info you can give about it? Thank you for any information or advice you can share.
Most days I feel like I am an imposter in the chronic illness space. My bloods/xrays are not that ba, but bad enough to show somethings wrong. But then why the pain, fatique, brain fog, blackouts, nerve pain, stiffness. If I'm not that bad, why do I feel miserable? The thought that this can get worse is overbearing! I look normal, I'm generally a helpful, talkative, able human being. So I feel like an imposter. I feel like I am not sick enough and don't belong. I have to fight to get heard by my docters, my friends and family don't understand. I'm tired of explaining. I now know that I don't absorb medications, THIS SUCKS! All I want is to be pain free, have energy, sparkle and enjoy my life. I'm in limbo as I can do neither whole heartedly. I am not deathly ill, neither am I capable to have a normal everyday life without the constant reminder this is hard, this is painful, this is exhausting. So yes, I feel like an imposter.
Don't get me wrong, I am so incredibly greatful for the things I can do and that I am not gravely ill. I am so incredibly thankful that I am not as bad off as a lot of people on this platform. All I want is for my current symptoms to be treated so I can continue with a normal life.
So yes I have imposter syndrome and I don't know how to overcome that! Not healthy enough to belong, not ill enough either!
#ImposterSyndrome #PsoriaticArthritis #Spondyloarthritis #nervepain #ChronicDepression #PTSD #CPTSD #generalizedanxiety #InappropriateSinusTachycardia #AutonomicDysfunction #atrialfibrillation #costochondritus #discbulges #JointHypermobilitySyndrome
Can anyone share your experience with ketamine infusions to treat chronic pain (fibromyalgia, CRPS, neuropathy, general pain, etc)? I have severe nerve pain that really limits my functioning and I would like to try ketamine infusions if I can find a way to access them. I’m speaking to my pain specialist next week and am wondering how to approach this topic with him? He has been very hesitant in the past when I’ve asked about this as he is concerned about side effects. I’m in Canada and not sure if these treatments are available in my city (let alone if they are covered or out of pocket), but I’m willing to travel if necessary. Any advice or thoughts you can share would be very appreciated!! Thanks so much!
I'm actually at the point where I'm considering lyrica. For years I've tried to avoid it but I'm so ouchy sore to the touch and tender that I'm not sure what else to do. I finally caved in and got hip injections, had to in order to see about a possible hip surgery. Having hip and low back pain since I was a kid concerns me for the future yet I'm hopeful. This is truly not how I saw my life at 30 yet somehow always knew they would be some physical discomfort to work threw. I feel if I can at least get the inflammation down I can sustain and maintain with the Fibromyalgia symptoms and the lax joints. This is truly a trying time however I'm grateful the weather is getting warmer as it helps ease some of the tension. My goal has always been to get it into remission which I hear is possible.
What are your experiences with lyrica or prolotherapy??
#Fibromyalgia #Neuropathy #ChronicPain #ChronicFatigue #nervepain #nervepainrelief #CervicalInstability
Why am I like this?
My #nervepain is flared up. It’s not horrible, but it’s distracting and at the point where it’s affecting me.
But in a way I did it to myself. It had been getting worse anyway, but I pushed myself too hard at the gym and now it’s bad.
The thing is, it wasn’t an accident. I knew I was pushing myself too hard. I knew the smart thing would be to stop and rest. But I forced myself to do it. In part because I was having a good time. I like seeing how strong I’m becoming. But part of it was that I don’t want to use my chronic pain/permanent injury as an excuse. I would feel like a quitter if I let myself stop. I would feel like I was taking the easy way out and like my arm was a limitation.
I wish I could learn to accept myself and my limitations. I wish I could learn to see myself as just as worthy even if I let myself quit when it’s beneficial to me.
I also wish I could take a sick day without feeling weak.
The theme for February's Mighty Art Room is process, so i thought I'd show something that is taken photos of at the time. It's quite old, but generally the way i most paint. From sketch to finished piece. This is one of the Fairy Godfather, which is my original character that I've written many books about and hope to publish one day when the health and pain stars align! This is a painting done digitally over a pencil sketch. I use a program called Painter which is very much like painting in real life, just less messy! 😅 I'm not very good with layers and things so yeah, but somehow it gets done.
Well off to finish chores so i can enjoy the olympics tonight! Yay! i hope everyone has as good a weekend as possible! #ChronicMigraineSyndrome #ChronicPain #ChronicIllness #Art #ArtTherapy #AnkylosingSpondylitis #SpinalStenosis #DoubleVision #cps #ComplexRegionalPainSyndrome #sciatica #nervepain #BipolarDepression #Asthma #Anxiety