pain management

I read Brianna’s story about when friends get tired of hearing about your chronic illness, and then a “friend “ texted me and asked how I’m feeling and I said “the same”… but this is
What I really wanted to say…

l have better days and then really bad days where I can’t do anything at all because the pain is so bad or the symptoms are in full force- it depends on the day.
It’s like one day I can pick my leg up instead of dragging it and then the next day I can’t. The pain is horrible and constant- the muscle spasms are constant and my neurologist is talking about a pump for the muscle relaxer medication.
I’m learning a lot about syringomyelia though and trying not to get depressed or discouraged but it’s really hard because it’s a very rare and Besides doctors appointments or being in the hospital I haven’t been out of the house since august 13. I literally can’t go anywhere because I can’t walk. My right leg doesn’t work-I have to drag it more or less. A friend of ours offered a wheelchair but dave hasn’t gone and picked it up.

I have a form for the Secretary of State to get a handicapped placard for parking but I have to find out how to get it. the police department here in WC doesn’t do them but —city—- does but i think i have to be a —-city—- resident. I don’t know how to get it.

Since it ls -SPORT- season everyone is busy doing that and with everything that happened to- husbands NAME- he’s not much help which i totally understand. He gets up at 3:30 in the morning every day. Then goes to SPORT practice right after work and comes home and eats dinner and goes to bed at 8:30. On Saturday they have practice and go over film and he and YOUNGEST SON get home at 12:30 then he takes DAUGHTER to the grocery stores and there’s a few hours but he has to do stuff around the house like the garden, yard etc. they do a zoom meeting on Sundays for SPORT too so literally he has no time and I understand. This is what life is always like due SPORT season but usually I’m included in it. I want to go to the games but can’t. It was such a big part of my life and now that’s gone too.

Someone literally told me if I imagine myself walking my brain will make it happen- Nobody understands or gets this. If I had a stroke or broken leg I think people would understand it better but because it’s so rare some doctors don’t even understand it. My primary care doctor said “but aren’t you glad it’s not MS?” Well of course but this is an awful thing in and of itself.

In addition to my degenerative disc disease (I have multiple herniated and bulging discs in my neck and lower back which is painful and causes sciatica in my legs) and I have multiple hemangiomas (blood vessel filled benign tumors on the spine) in my neck, thoracic and lumbar spine which can cause pain too- and now the Syrinx is located at C7 to T1, it’s 5mm wide (your spinal cord is around 6mm wide) so it’s blocking the normal flow of cerebral spinal fluid which is what is causing all the symptoms. (Pain, numbness and pins & needles that travels over my whole body: arms legs chest face back etc , the inability to use my right leg, incontinence and constipation, migraines, dizziness and vertigo,

There’s literally nothing they can do for the syrinx in my spinal cord other than treat the symptoms. It is interrupting the flow of cerebral spinal fluid and also putting pressure on my spinal cord from the inside out - and causing all of my symptoms. I may have had it since 2021 based on MRIs but it was much smaller and since recently it’s swelled and grown in size (see the MRI image) .

In some cases they can put a shunt in to drain the fluid but it literally fills right back up so they drain the spinal fluid into your body- but my team at HOSPITAL NAME said I’m not a candidate for that because of my degenerative disc disease and in some cases it doesn’t help or makes symptoms worse- it’s not a very successful thing either- sometimes they can do a “decompression “ surgery but they usually do it only for syringes that are really big - but they want to monitor it to be sure it doesn’t grow bigger since it has recently swelled and grown. Sometimes syrinxes have a rapid onset and growth period. They keep asking me if I’ve had a recent trauma like falling down stairs etc and the only thing that I can think of is just repetitive motion at work that one day with all the customers in a row but other than that … nothing has happened. They said that could have flared it up but I truly thought at the time it was my degenerative disc disease and associated symptoms.

I want to use my neurologist appointment in October as a second opinion- and I found a doctor in TOWN NAME that has experience with syringomyelia
but his wait list of 12-18 months out.

As for work- I have no idea if I qualify for social security, I haven’t filed yet for it but I’d rather make money other ways- and not depend on that- sooo…
I’ve been doing BUSINESS NAME because it’s all online and I am trying to keep it going because it’s the only way for me to make money. I’m also joining some brands to be an affiliate/ambassador trying to earn commission on sales (also since it’s online) in a nutshell , I’m trying to make the best out of a crappy situation. It’s just hard because one day I might feel ok like I can manage the pain and the other symptoms and the next day might be awful where all I can do is lay on the couch because of the pain or a migraine or can’t feel my arm or hands. Every day is different and I have no idea until I wake up what it’s going to be like.

I’m really sorry to dump all that on you but I’m so not in a good place at all. I’m not saying it to be a “poor me” person but honestly my life sucks right now.
#Syrinx #Syringomyelia #chromic #PainManagement #Loneliness #Depression #cps #EhlersDanlosSyndrome #DegenerativeDiscDisease #DDD #spine #Chiari #ArnoldChiariMalformation #myelin

Today, I'm having a hard time dealing with and coping with my physical pain. Sometimes makes me feel depressed. I wish that I could have just one day to see what it's like to not be on the pain scale at all. I also wish I had a decent doctor that would actually be able to help more with my pain, and I live in a rural area so opioids are even more frowned upon here than they are already. Opioids aren't always the answer to pain and I very much understand that, but pain management IS HEALTHCARE, and sometimes those meds are needed for severe flare ups. I do everything else, chiropractor, neurologist, massages, therapy, distractions, even see a pain management doctor. But every doctor I've been to out here just gives me gabapentin and muscle relaxers at high dosages, and this includes the two emergency rooms that are out here in the rural area. I understand that stronger meds can potentially be dangerous if abused, but what I don't understand is the stigma around it. Some people actually need it and patients are suffering in pain because of the lack of pain management and stigma. You may not agree, but this isn't about wanting opioids, this is about wanting pain relief. Thanks for reading. #MS #Fibromyalgia #PainManagement #ChronicPain

It is hard to believe that another year is here. I have suffered with CFS/ME since 1984. I coped with Chronic Pain with no medication until 2016. My doctor referred me to Pain Management at that time. I also have a severe case of spinal stenosis. Anywho... I am starting this again! I have been stopping for the roses for a couple of years since I retired. I was an elementary school teacher in a wonderful school district. Now I spend my free time working with planners and journals. I am a voracious reader. In 2023 I read 275 books. So I wish all of you a great day! It is FRIDAY!!#52SmallThings #ChronicIllness

#CFS #PainManagement #SpinalStenosis #educator #biblejournaling

#Planning

Hello! So, I was curious if anyone out there has tried or knows anything about sound or vibration healing?? Specifically for chronic pain? I swear I have tried everything under the sun and recently heard about this. If you wouldn’t mind, could you please share your experience or what you found out that helps for you? I would be super grateful!! #ChronicPain #Fibromyalgia #Healing #PainManagement

I've been diagnosed with hypermobility spectrum disorder very recently. I'm currently trying to process everything and work out what help I need to go back to the rheumatology team in January. I've had symptoms since I was a child but I've been really struggling with pain in my hands and feet particularly in the morning. I've had this for over a year now and been going back and forth with doctors until I finally got to see a GP who referred me for every blood test she could think of and referred me to rheumatology and cardiology to cover all the bases. I'd be interested if anyone has tips on exercises or pain management. I'd love to get fit again but the pain next day just makes it unbearable. #hypermobilityspectrumdisorder #JointHypermobilitySyndrome #Hypermobility #PainManagement #Pain #Exercise