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Arachnoiditis: Looking to talk with others
I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.
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I was taking 600 mg of Gabapentin a day...(I had a spinal cord injury from degeneration)..And while I don’t believe I’ve experienced any memory loss........I did experience water retention and swelling in both of my legs. When I complained to my doctors and their nurses, they didn’t believe it was coming from the gabapentin. They thought my swelling was due to either too much sodium or other reasons… (I’ve never had swelling in my life for any reason) Anyway, I weaned myself off of the gabapentin over the course of two weeks, and as of now I wake up every day with absolutely no swelling in my legs or my feet. So, don’t be surprised if you eventually have swelling and take it from me it’s most likely due to the Gabapentin.
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1 ReactionTo me yes. Gabapentin ( Neurontin ) = memory loss which is vert scary
I would not take it again
This is a rarely diagnosed problem! Symptoms are usually low back pain, and associated thigh, leg pain. Treatment, due to lack of awareness of this issue, is limited. Cause usually after spinal intrusion, such as surgery, spinal anesthesia , many to diagnose or even help problems! Wondering how you’re doing!
So happy for you Patricia!
That was my life five years ago. Despite the diagnosis of three very painful conditions : CRPS and arachnoiditis and also degenerative disease with several herniated discs etc that I still have. I was just like you still a happy camper enjoying family and grandkids and I actually I am still a happy camper but in a a scooter or wheelchair, I was
holding two jobs ( Montessori school teacher and an evening job at the Houston Symphony) But on September 14th 2016 driving my way home after working at a concert, a young guy crossed the intersection on red light, destroyed my car and caused me a displaced fracture in my sternum( breast bone )
From there there was a chain of events. I was back at work six weeks later but then came one after the other : costocondritis, L1L2 severely herniated disc ending up in surgery, dislocation of both jaws, electric shocks and excruciating pain in the right eye and eyebrow ( MRI showed a vein and an artery pressing on the trigeminal nerve ) that led to the trigeminal neuralgia diagnosis, a relentless TN that led to two brain surgeries and gamma knife surgery because it had left me without my ability to speak, I can relate with your arms, I can speak now, it lead me to many ER visits and admissions, in the meanwhile all of my joints were swollen and painful and I started having little clots and that led to the diagnosis of rheumatoid arthritis with positive rheumatoid factor, and RA usually presents with other autoimmune conditions so I also have Hashimoto’s disease and scalp psoriasis.
These days I am having severe sciatic pain in both legs, sitting up is a ceremony haha but I went to Phoenix for my grandson’s
BD ( I am in Houston) and to Austin three times my daughter is there with two other grandkids. My point is that I agree with you, despite everything that is goi nag o in my body and the horrendous pain of TN my wheelchair, cane and scooter have become amusement for the kids. I give them rides in the scooter, and the play Broadway musicals with my cane.
Let’s keep our heads up and let’s keep our spirits high. The opposite is nothing but living in death.
Not an option
I’m so sorry for all that you, I - we - go through. It all just feels so weird. For me, PT seems to exacerbate the FEELING pain. I am not saying it makes things worse, but I feel more pained. Today I am depressed. I am 72 and alone. With respect and appreciation for your shares - JEB
I love your last two paragraphs. Thank you for your inspiration! I adore my grand children and so look forward to seeing them again. They moved to California for two years, but my daughter is moving back without a job-part of what is important here is me. And I feel blessed.
I also take Gabopentin and Advil. It took a while before the Gabopentin kicked in but it seems to be working but mine is a small dosage. My achronoiditis was a recent diagnosis and there not sure of the cause except I fell before the crippling pain in my left leg started.
Dear buddies in struggles
You also inspire me. It is good to be in touch. Regarding PT you are not alone. It has only worsened my pain every time. Some doctors think we don’t have the will to improve
How would we not?
Do they think we enjoy this life ?
Of course there are doctors who are sympathetic but not many
And it was so interesting to learn that AA does not have a medical code. No wonder we never see mentioned in our medical history except, in my case, the MAYO CLINIC and only a couple more here
Let’s keep our chats please!
Take care!
I have had a pump for over twenty years and yes it does work you just need a team to help you, There a lot that goes into having one to start you need a test to see if it would help you after that then you need a surgeon to inpatient it then a doctor to manage it to make adjustment but I will say what was told to me don’t have them turn it up to where you have no pain because you will have them keep turning it up, it change my life when I got my pump I would say that I would do all again this is photo of my pump scar that all I except the one on my back but I couldn’t get a photo of that good luck on your journey
I know what you mean about doctors not listening to you I had a heart attack five years ago they put me on so much medicine I started to have hiccups this went on for over a month so bad that my wife called and ambulance to take me back to the hospital they didn’t know why it was happening they even tried thorazine all it did was make me sleepy it got so bad I couldn’t catch my breath so my wife started looking up all the new medicine I was on and found one that said that it could cause problems with your Diaphragm so I stopped that one and two days later no more hiccups so keep telling them what you are dealing with you are your best advocate .