MANAGING MY ARACHNOIDITIS : How I manage my daily symptoms

I’m sorry that you’re going through this! I’m a 32 y/o male who until my injury, which was also 7 years ago, was extremely active with competitive sports. I’ve been dealing with arachnoiditis since I had a botched fusion of L4-L5 in 2017. Two screws were misplaced, but one was screwed completely into my spinal canal. It’s been bad for about 3 years, but I didn’t get the official diagnosis until early this year when I had the misplaced screws removed (I found out they were misplaced last fall). I’m dealing with the same thing with my CSF - I’m actually on a diuretic now that has done amazing things to help, including fixing issues with my eyes. I was diagnosed with pseudotumor cerebri in May that was caused by increased ICP. My ICP was so bad that I had trouble speaking some days.l, and like with you, I narrowed it down to days where I not only sat a lot that day, but sometimes it would be a delayed response to being inactive the day before. The one thing that I unknowingly did over the last 5 years that ended up to helping me tremendously was the continuous drive and obsession with PT and working out to get back to where I was before surgery. I didn’t know that I was Fighting a battle that I couldn’t win, but I was unknowingly slowing the progression and maintaining my mobility. I have to dial it back a bit when I have bad flare ups, but if I even take a day off to “rest,” the pain and other symptoms skyrocket. I broke a toe earlier this summer bc I don’t 100% use of my left foot/leg from the damage from the screws, and I took just ONE day off the pain skyrocketed so badly that over the next 3 days, I went out and planted 40’fruit trees across the farm here. Because the pain from my toe and back pailedd in comparison to the pain from staying off my foot and staying still. Living on my parents farm has been the biggest blessing i could for, as like you, I can’t focus on one task for more than 30-60 minutes - yet I still need to stay active. So being their farmhand throughout the day to take care of the 30 animals and being the handyman and carpenter on the property has been an enormous blessing. I don’t control when I sleep either - my back is in charge of that. So some nights I’m out at 3am working on the garden or building an animal shelter or landscaping. It’s taking a toll on the rest of my body (lateral epicondylitis on both elbows, Achilles tendinitis, and plantar fasciitis are the main culprits of that). But again, the pain from those pail in comparison to the burning/numb sensation from sitting or standing for long. Corticosteroids have helped with the pain in the past, but I have horrible reactions to them. of the 7 rounds that I’ve been on. The LEAST amount of weight that I’ve gained over 3 weeks from them was 12lbs.. and that includes cutting my daily calories by about 500 a few times to try to keep the weight from coming on. I’m actually starting a home carpentry and plant nursery business as it’s something I can do for short spurts and on my own time.. and I can put the year I spent learning to programm (what I was in the middle of changing careers to before sitting got extremely painful to do) to use with managing all the plant care with watering, temp, fans, etc… But I also started the process toward starting a spinal cord stimulator trial to see if that can provide any relief as a back up because right now, I’m on muscle relaxers daily and can’t continue with that. And they (methocarbemol) only being my pain down by one level.. which is huge when going from an 8 to a 7, but it’s not something I want to be on long term. I started crying while listening to your video and cried writing a lot of this because for the first time in the past 7 years, I finally found someone who is dealing with exactly what I’m going through. And I HATE that for you, but if it’s any consolation, it has made an enormous difference in my life. The physical pain is as enough in itself, but the mental suffering from everyone thinking that you’re just being dramatic out of pure ignorance (in the actual meaning of the term, not in the commonly used term that’s now used as an insult) because they don’t understand what true pain feels like. I avoid bringing it up completely when I can now because everyone thinks they have a quick fix: “I was on bed rest for weeks until Intried acupuncture and it changed my life” or “have you tried using ice or heat” or even “I’ve had a crippling back injury too and I got through it just fine, it’s time to man up and get over it” (the last one was has been said multiple times, but it’s actually what my first surgeon who botched a microdiskectomy told me after coming back to him 3 times post up). He removed so much of the disc that just 3 months post up, I had spondylolystheis from the facet joint deteoriating so much). I appreciate you taking the time to post this more than you will ever know.

I just researching on this topic, just wanted to say thank you for the content & helping ppl. Bravo!

Becky thank you so so much 🙏 Your explanation re symptoms is incredibly helpful. It's such a difficult condition to describe. I've been suffering for many years too. Something you spoke about is acceptance. This is an incredibly difficult thing. And I feel that's still something I've not reached yet. We all have our burdens that's for sure. Sending you love and prayers from Ireland 💚☘️

Thank you for sharing. I know videos like this always helps me.

Thank you for sharing Becky. It gives me hope that I may see similar improvement once I find the right doctor.

You describe it all so well. Outstanding video which helps so much. Thank you🙏💜xx

Happy for you. Wish I could find a knowledgeable Dr.

Intriguing alike. I do have a mid thoracic spinal CSF venous fistula along with multiple spinal cyst leaks, and the unbearable headaches that such implies. I also suffer from lumbosacral burning (including the soles of my feet), but I don't have arachnoiditis at all. Likewise, my SIH/CSF headaches are way worse sitting down than standing upright (I guess due spinal compression and by so CSF dynamics changes ?¿). Obviously, lying down the occipital headache is fully gone. And lastly, if I must be upright, a very gradual intensity exercise does seem to alleviate the headaches (even more with coffee intake). Thanks for sharing.

I am so blown away when I saw this channel and I listened to your story. I felt like you were talking about me. I am not understanding. Why or how come they have not diagnose me with that. The only thing that helps is prednisone. The sitting, standing, walking everything you said. Concentration is totally off. I do get headaches sometimes now and I never used to get those before. And it is very high and learning how to help with this and I honestly agree with you if I was told that it would make it more easier for me to learn or except this situation.

Thank you for the great video! After my lumbar puncture, I used to have headaches, burning sensation in my limbs, pain, cramps, now these symptoms i mentioned i don’t have them anymore, but i still suffer from sitting down, or lying on my back, and now i just developed blurry vision in my right eye .. i really don’t know what to do with the vision issue

Thank you for being such a guiding light in the CSF leak and arachnoiditis communities! I am curious- what “early” signs of arachnoiditis were on your earliest MRIs? Also, if you don’t mind me asking- what was your symptom development early on that made you think “arachnoiditis”? I’m navigating my own journey of neuro inflammation after a blood patch.. no adhesions have been seen on MRI, but I was having leg twitching/cramps, urinary frequency, and burning in limbs.. we treated with high dose IV steroids about 5-6 weeks after the patch/symptoms.. I’m worried to wean off steroids, but will continue other anti-inflammatory tools (NSAIDs, curcumin, LDN, PEA, low inflammation diet, ice) Again- thank you for your resilience and guidance. My heart is with you; all the good energy sent your way to continue life flare-free ❤️

Thank you for your willingness to share. That pulling sensation you mentioned, I have that, only mine can quickly go from a steady pulling to a real quick jolt or yank, when I’m just moving around house, any wrong move and it’s like a jolt. It’s so traumatic It takes my breath away, my question is, are there exercises or stretching that can help calm that part of it down? It’s so bad right now, I’m afraid to move, but as you know not moving results in more pain and tightness.

Hi Becky Thanks for all this information Did you manage to get all your meds prescribed on the NHS? I’m recently diagnosed AA and awaiting my first neurology appt next week - my main worry is getting doctors to prescribe this medication as I know it’s part of the Tennent Protocol also. Hope you are well Katie

I had a fusion of my L5-l3 in 2014. I was supposed to be in the hospital for 3 days. On the 2 day doctor came in and I kid you not he violently pulled out my drainage tube followed by a spinal fluid leak. On day 5 he opened me back up and found a suroma and hematoma. I didn't go home until day 10. I went home in a lot of pain. My stitches came out and a few days later my area started leaking and would continue until it started looking like a swollen worm on my back and was red. I couldn't lean back in a chair. As there continue to leak through bandages and my underwear I told the doctor this is not right. I went to the ER and was seen. I told them and they tried to have me come back in. I told them if the doctor was concerned he could walk across the street. I was admitted to the hospital with an infection and the internist said you have a suroma. He took a big chance and drained it with a needle. I tried 16 injections and nothing helped. No one called it arachnoiditis until years later. Of course they didn't want to continue to treat me or given me pain meds to deal with the 24/7 pain from the base of my skull to my toes. Now I save my pain meds until I hit my wall but I will try everything else first. I'm teleworking since the pandemic. I spend my lunch hour resting my back and sleeping to then go back to work. I also spend 1 hr before dinner laying down. Every part of my life is impacted. Strength, sleep, joy just everything but I have to keep going. No one understands this condition and doctors never speak about it. They never tell expectant mothers during labor that you can get this condition with an epidural. It's not rare like they say. There are thousands of people that have it. Wishing you patience and peace while you deal with yours.

Sadly wheelchair user try use my walker. Has spinal zurgert

I have adhesive arachnoid it is. For 49 years. It took 19 years to diagnose. Tried a stimulator 2 actually. Now I am on morphine pump. It seems it’s very hard to ease the pain. I also have stenosis in the cervical and lumber spine. I live in Dublin Ireland and there are days when I wonder how long can it go on.❤❤🙃☃️

Hello Becky! I have been following your videos and posts on FB. I have also developed Arachnoiditis symptoms after a sports injury but they were so mild. But a year after i have received a ESI into mu L5/S1 which led to this mess i’m in right now. My case is also not officially diagnosed as my MRI images shows a little bit of clumping. According to Dr Tennant i have a plain case of Arachnoiditis. Luckily i’m not in pain 7/24 but my other neuro symptoms are very hard to deal. I have 7/24 mild dizziness, constant tinnitus, runny nose, worsened eyesight etc. I have also significant problem with sitting and carrying something heavy. If i do such a thing then my bladder goes crazy, frequency, hesitancy, sometimes retention etc. I can’t sit anymore. And i have the same sensation in my lumbar spine as if there’s a very tight rope in my spine and it feels like my spine is glued to each other or stuck. I was wondering if you have any bladder issues as a symptom? I congratulate you for your resilience and giving valuable information for people who are dealing with such problems.

Thanks so much for sharing. I’m very interested to hear more about intercranial pressure, it sounds just like me. Is there a safe way to confirm this?

I get that horrible pulling too i hate it. Diagnosed in usa but im in uk Does anything help the pulling

I've been suffering for many many year's of all these systems and more as well. I just got diagnosed after 35 years of suffering not knowing what was wrong with me 😭😢😭. This is a painful and horrible disease. God Bless you