Arachnoiditis: Looking to talk with others

Larry, you are setting yourself up for Adhesive Arachnoiditis. Read the medical research on how multiple injections and multiple back surgeries are linked to developing this. And let me tell you, it is very painful.

So what are my options?I am building our house and doing a lot of strenuous work.

@donfeld
Amazon might have it. Or try Kindle.
Does the stimulator work for you?
I have all symptoms of Arachnoiditis and it is hard to find a Dr that my insurance would cover in IL.
When you say pump, what medicine is good in it? I am on Diluadid. It is not helping my pain.
Morphine was discontinued, because of its addictive nature.
What should I do for pain?
Please reply. Thank you.
VJ
Is it a disease or a condition?

@mmata573085 your comment os so lovely it warmed my heart thank you God bless you, I'm still trying to learn and come to terms with the endless suffering and how to do it with grace and positivity I'm 34 been suffering for the last 10 years with nerve/back issues no one could figure it out. Is bitter sweet to get a diagnosis finally to find out its not fixable and could possibly progress even worst is a hard pill to swallow.

Guess I have to say goodbye to the old me who could climb mountains and had energy for days, my body is broken but my soul is still beaming with light.

It's 2am on the pain train once again oxycodone,morphine diazepam,pregablin and my final friend ketamine keeping me company, I just want to say I love you all this is a hard road but we must walk it in faith this test we have received I have to believe this is just the human experience and after this on to the next life 🙏 ❤️

Lyrica helps the pain, but it makes me “stupid” I can’t remember words, can’t find my words when I talk. I hate it. I can relieve pain, but behave like I have dementia, or endure the pain, and still struggle to communicate because you’re hurting.
I have issues with terrible cramping in my legs, feet and toes. I can’t explain how painful a “Charlie horse” of your toes actually is! I wake out of a sleep, tears streaming, trying to put my balled up foot down flat on the floor.

My PCP recommended tonic water. It did help some, but I would drink so much before bed, I was up several times to potty. Then I discovered quinine melt away tablets. Feel a cramp coming on? Take 3 tablets and let them dissolve under your tongue, do not chew. Before they are 100% desolved, your cramp will be gone. This has been such a game changer for me. I used to wake every night with some form of cramping, often several times a night. Now, I take this once if I feel a cramp, and can usually sleep the night.

It is called Hyland’s leg cramps and you can buy it on Amazon very reasonably. If I remember correctly, I only had to repeat the dose twice for one very bad episode. I promise, I am in no way involved with this product other than a very grateful, satisfied customer. They have me on enough questionable medications, this is OTC and has been a God-send.

Absolutely. I had two spine surgeries last year many epidurals. Unsure what caused it, but it doesn’t matter now because I have to move forward with where I am sometimes sitting is unbearable sometimes standing is also unbearable.
The pain has come and gone for the last year and although I have mentioned arachnoiditis to my physicians, because it was noted in my last Mri report, it was dismissed as a possibility until now. Upcoming scans to get diagnosis.. future makes me very nervous because this pain sometimes is unlivable. And grateful for Support groups like this one.

@smtaylor What is your Lyrica dosing?
Mine is 140 mg 2x daily. Started a week ago.
Changed my life. I am 7 weeks past my 5th L3 to S1 spinal fusion. My surgeon says my pelvis looks like a pin cushion.
My calf muscles, feet and toes went numb and into extreme pain after surgery 2.
I have suffered from lower back and pelvis pain for over 3 1/2 years. Add the nerve pain in my calves, feet and toes (feet & toes are the worse) I have been miserable. Way too much pain.
My 5th surgery has helped with my lower back pain. I take 10mg/325 Oxycodone 4 times a day. Oxycodone helps with my lower back pain but is worthless controlling the pain in my calves, feet and toes.
Dr prescribed Lyric last week and 1 hour after my first 140 mg pill the pain in my calves, feet and toes pain completely gone. I finally slept longer than 2 hours. I haven’t been able to sleep longer than 2 hours since my first surgery.
Usually while sleeping, at the 2 hour mark, I would wake up in extreme pain in my calves, feet and toes. My feet felt like they were in boiling water. Terribly painful, now completely gone. Only been a week, got my fingers crossed.
But, I had and continue to have side effects.
The first 3 days taking Lyrica my speech was a mess. I had a hard time stitching words together. When I spoke my wife thought I was having a stroke. I also had muscle spasms all over my body. I lost control of my muscles. I fell, bumped into walls, couldn’t form words, I was a total mess.
Well, day 8 the side effects are almost completely gone. Almost.
I am so happy the side effects are gone because I did not want to stop taking Lyrica.
Lyrica has changed my life. Just at day 8. Got my fingers crossed that the pain in my lower back, ,my calves, feet and toes is finally controlled.
Now I hope my healing naturally reduces all my pain so I can get off all my pain meds.
More to come!

@carolynhughes75
Agree!! It is hideously painful!! Nothing compares. Life altering for sure!

I had a similar situation. Will never have another injection.
Started Lyrica 50 mg three times a day/ plus meloxicam/ will add in LDN 4 mg once per day prn.

@maxi49
I had two back surgeries last year , synovial cyst, decompression surgery, followed six weeks later by L4 5 fusion.
Mri shows arachnoiditis, going to have a CT Mylegram for confirmation next week.
Hideous hideous Pain, I’ve been complaining about it for months. I feel I had to really push the diagnosis of arachnoiditis. Although it was mentioned in my most recent Mri in February, it wasn’t picked up on or addressed or even acknowledged until a few days ago. I was told by the neurosurgeon PA when I brought it up in February that I did not have that diagnosis, and now the same Mri re-reviewed, the impression is different.
Anyway, can’t change the past, but I also am extremely active. I go to the gym every day at 4 AM, it’s my passion my happy place and I am fearful of losing that.
I lost both siblings last year, as well as needing to retire from my well loved job as a healthcare worker, do not want to lose my independence and my mobility as well.
I just started on Lyrica 50 mg three times a day, as well as meloxicam ,
Will add low-dose naltrexone PRN.
Possibly looking into a paddle lead, spinal stimulator. This is a horrible diagnosis with very little help other than Pain Management..

I too had many epidurals prior to this new insight, I had one as early as three weeks ago and it made the pain absolutely worse. Epidural do exacerbate arachnoiditis. I will never have another one..
Sounds like our situation may be very similar.
Good luck to you!!