Hello. I was diagnosed with Arachnoiditis 3 years ago. Went from regular doc to pain management doc. I would advise you go to one in your area. They have so many options. I am on fentayl patch as well as hydrocodone. He also put me on marninol. Works good. I live in SC so we don’t have recognized Cannabis outright. I am trying CBD for first time. Hope it works! Good luck!

ARACHNOIDITIS & MUSCLE CRAMPS
Hi. I’ve had numerous spinal procedures: 3 myelograms, diskograms, spinal taps, epidurals, nerve blocks, C/S surgery and L/S surgery, both with instrumentation. Result, about 11 years ago: Arachnoiditis. Unbearable cramps in both arches of my feet with every step.
My neurologist put me on pramipexol (furfural acetate). It is a Dopamine agonist/promoter. It’s used to treat Parkinson's disease and restless legs syndrome, but also reduces the frequency of my cramps from Arachnoiditis so I can walk. The cramps are worse at night.
Other brand names are Mirapex, Mirapex ER. By prescription only. Fortunately, I don’t drink alcohol as it can cause an interaction.
There are side effects, so read up on it before deciding to take it.
I’m starting to wonder if pramipexol is what has radically worsened my bladder incontinence. I plan to ask my neurologist in 2 weeks.

Hi - many of you have shared about your arachnoiditis, and it would be great to hear how you are doing. I'm sure others would benefit from your experiences.

@jlfisher56 - you'd mentioned that a doctor talked to you about a pain pump or a stimulator, and that you declined. Did you decide to go another treatment route instead? Are you still using pain patches and oral medications?

@ginpain - how is your pain? What is helping you most to control it?

@stoaway - how are you feeling lately? How is walking going for you?

@annmaria - were you able to get a first floor apartment? How are things going with your pain and trying to clean, cook and other household chores you said were getting so difficult?

I have Ahesive Arachnoiditis and I wished I had known that I needed a rheumatologist. Things started to get worse over time. My thyroid started not working properly. I then developed Amemia from low saturation. I was so tired and my heart was always racing. My inflammation markers started climbing and climbing. This went on for years. My C- reactive protein test that my doctor first took was a 22 mg/L it should be less than 1mg/L. When I finally went to a rheumatologist it was a 32Mg/L. My ESR 56. When I went to the rheumatologist she asked what took me so long to come? They have medicine to stop the progression of an autoimmune diease. I had developed Raynards syndrome. She saw that right away. My toes were purple and swollen. This all comes from chronic inflammation. I was put on calcium channel blocker’s and lupus medication . My C-reative protein went down to 8mg/L in 3 weeks. I first got tested in 2015 and never been below a 22mg/L. I couldn’t shower without sitting down after I got out. I was so fatigued . I was not as tired. Don’t get me wrong I have days. It’s just not everyday.

My hair started growing back in. It was thinning and felt like straw.

My neurologist was giving me narcotics and I stopped taking the strong stuff on my own. When I went to rheumatologist first thing I said was I don’t want any pain medication. I got her attention then. I told her I want to get my inflammation under control. Inflammation was destroying my body.

I still have issues with my iron, Low iron, high Ferritin and low saturation. My B-12 is over 2000 and normal below 900. My family doctor wants me to go to the Cleveland Clinic. They are familiar with Ashesive Arachnoiditis and auto immune disease.

If someone would have told me that I needed to get the inflammation under control. I wouldn’t have developed all these other issues.

I didn’t know that a rheumatologist could help me.

ARACHNOIDITIS.
Hi Chris, Judy, Myra, John, Patrick and friends with Arachnoiditis. @chrisinasuit @judyfalkoff @rpennino @johnbishop @patrick17 @stoaway @ledgerwp
I’ve had it since my last spinal surgery nearly a decade ago. Awful for all of us. Some of you indicated that you have not found a specialist to diagnose or treat Arachnoiditis and are willing to travel. I found some good and encouraging information on the Cleveland Clinic website.

My former pain management doc once said, “There’s nothing available to treat Arachnoiditis. I’d have to put enough morphine in your pain pump to put you in a coma which obviously is not a solution.

In the interim, my neurologist has had me on pramipexole that lessens the amount of painful cramps I get in my feet every day, especially at night.

However, the past year or so, I’ve been having sudden jolts of what feels like an electric shock in my feet. It makes me jump! I’ve been assuming it was the peripheral neuropathy, but after reading this article, I wonder if it’s not from “progressive” Arachnoiditis (which I also didn’t know but should’ve guessed). Anyone else have this symptom?

Below, I copied the article for your convenience. If you want to contact them with questions or for an appointment, go to consultqd.clevelandclinic.org. I hope this helps someone.

They mention the spinal cord stimulator. I had one implanted years ago and it didn’t work for me, but this physician states that they are greatly IMPROVED today.

Also, I don’t know if the snail venom injected in my spinal column that they speak of would work for me. I was on it several years ago in my pain pump and after a year, I had audio hallucinations from it and it had to be replaced with dilaudid which just made me dysfunctional. Eventually, I came to the conclusion that opiates and the venom can’t relieve my pain so I weaned off all of them. I don’t take any pain medicine so I’m very alert and do quite a lot for a disabled 65-year-old woman... gardening, crafts, writing, housecleaning, a full-time ministry and social life, as well as involvement with my church, family and friends... BUT IT HURTS! ALL THE TIME!

CLEVELAND CLINIC:

Arachnoiditis is a rare condition that can be overlooked. Its causes differ today from decades past, and new modalities are offering more optimistic prospects for pain relief.

Characterized by severe stinging or burning pain, arachnoiditis is an inflammation of the arachnoid tissue of the spinal cord with subsequent scar tissue formation. In the years prior to widespread use of magnetic resonance imaging, intrathecal injection of contrast material for CT myelography was the primary cause. Intrathecal steroid injections also sometimes caused arachnoiditis, but the use of intrathecal steroid has been supplanted by other means to address pain diagnoses.

Today, arachnoiditis is seen most often following spinal surgery, and occasionally following bacterial or viral meningitis. “You won’t encounter it every day in your practice, but it’s also not a zebra. It’s probably a bit more common than is recognized,” says Cleveland Clinic pain specialist Robert B. Bolash, MD.

Sometimes the condition can be dismissed because the vivid “electrical” sensations described by patients do not follow the path of any nerve. “But it is definitely a real condition and a challenging one,” Dr. Bolash says.

A 1990 review article about arachnoiditis in the Journal of the Royal Society of Medicine concluded: “The relentless and progressive pain syndrome…is taxing to the patient’s morale. In many instances, doctors, relatives, and friends fail to realize that the pain can be as bad as terminal cancer, without the prospect of death to end the suffering.”

The picture is far less bleak today. Two different modalities, spinal cord stimulation (SCS) and intrathecal infusion of the N-type calcium channel blocker ziconotide, can provide significant opioid-sparing pain relief to patients with arachnoiditis, along with chronic pain of other etiologies.

Cleveland Clinic was recently involved in a multicenter, prospective, randomized clinical trial comparing 6 months of treatment with spinal cord stimulation in patients with chronic refractory pain following back surgery. A proportion of subjects found marked improvement in pain which permitted them to resume activities they’d since abandoned due to intractable pain.

“In last 5 years or so, implanted spinal cord stimulators have come a long way in terms of their effectiveness, with a number of innovations in the type of energy we deliver, the frequencies and waveforms. They’re definitely a big advance, and something I think we’ll see improve further,” Dr. Bolash says.

The other approach to pain relief in arachnoiditis involves intrathecal infusion of ziconotide, which is derived from the paralyzing venom of a marine snail and can only be given into the cerebrospinal fluid. “Pain pumps are no longer just for end-of-life chronic pain, but have permitted a number of patients to eliminate oral medications and their side effects” he notes.

These new approaches to arachnoiditis are allowing people to have functional improvement. “We don’t have perfect options or cures, but for those people who have been living in distress, we have something,” Dr. Bolash says. “And these options help us to avoid long-term opioid prescriptions that can lead to side effects such as addiction.”
Jan. 4, 2018 / Pain Management / Education
Tags: arachnoiditis, pain management, robert bolash

Hi. I have had arachnoiditis for perhaps 10 years or more. Due to degenerative disk disease, I endured a large number of discographies, nerve blocks, spinal taps, myelograms and other invasive procedures as well as two spinal surgeries (cervical and lumbar with a great deal of instrumentation implanted). Arachnoiditis definitely can develop from too many invasions to the spine, as in my case. My primary symptom , which is differentiated from my other numerous neurological disorders and diseases, is burning pain in the buttox and severe cramps in my feet every day. They can be triggered by walking on a cold floor or just buy the temperature in the room being too cold. They are much worse at night. The only thing that has helped reduce the number of painful cramps per day is a drug called Pranipexole, prescribed by my neurologist several years ago. Prior to taking the medication, almost every step I took caused a “Charlie horse” in the arch of my feet. I hope this helps someone.

I to have Arachnoiditis and I live in Florida searching for a specialist also. I have read up on a doctor Forest Tannant he has used a regimen to treat arachnoiditis I am using his recamendations and trying to see if my pain management doctor will follow his treatment plans. He said Arachnoiditis patient need to have control of the inflamation Toradol shots and other antiaflamitory meds we also need are hormones checked because we usually will have a low count and should be on hormones meds that help with the ones we are low in. Dr. Tannant also states we need to find Doctors that will recognize that we have Arachnoiditis this will be the hard part. If anyone knows of any Doctors in Florida please let me know thanks.

Please help me join this group.
How do I join?
Thanks

I’m so sorry for your condition and pain. While researching spinal cord stimulators I read that they are used to treat the pain for Arachnoiditis. Here’s the website https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Spinal-Cord-Stimulation I hope this will be helpful to you.

Hello @ginpain, welcome to Mayo Clinic Connect. There several other active discussions here on Connect that may provide some information and members to connect with to share symptoms and treatments.

Groups > Autoimmune Diseases > Myasthenia gravis (MG)
-- https://connect.mayoclinic.org/discussion/myosthenia-gravis/

Groups > Autoimmune Diseases > Myasthenia Gravis and Stiff Person Syndrome
-- https://connect.mayoclinic.org/discussion/myasthenia-gravis-and-stiff-person-syndrome/

Groups > Chronic Pain > Arachnoiditis
-- https://connect.mayoclinic.org/discussion/arachnoiditis/

I tagged other members who like you @ledgerwp @asw417 @Tbato622 were looking for a doctor specializing in Arachnoiditis. @d_corley43 strongly recommends her doctor in California. You may wish to connect with them.

@stoaway, have you found any treatment that helps with the pain?

John