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Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

The Director of the FDA comments

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

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.

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

I have Adhesive Arachnoiditis and have all symptoms of lupus. Taking pain medication over a long period of time seems to rob you of your happiness. I have found three wonderful female doctors that have started helping me with the chronic inflammation in my body. LDN (3 mg from Compound Pharmacy) works over time. Plaquenil 100 mg (Lupus medicine) in the morning and LDN at night. This has helped me more than any pain pill! My blood work has improved. Your hair will start to grow back. My legs don’t fell like lead pipes.

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

I had a doctor tell me if you don’t get the inflammation down you will never have any relief. I started not absorbing my iron or minerals due to inflammation in my gut. You may be making iron and have no saturation! My AA now has all symptoms of Lupis. I don’t believe it’s Lupus. I believe it from the AA going untreated. I was on pain medicine for years. That was my only treatment. If I am not absorbing my iron…how can I be absorbing my pain medicine? I had enough and now I am on the LDN at night and Plaquenial in am. I told my new doctor I don’t want anymore pain medicine! I want to get rid of my inflammation. My inflammation markers were off the chart. C reactive protein was a 36.7 is suppose to be lest than 1. ESR was 70 suppose to be 20. Pain medicine was not helping my numbers. They were climbing every year. I had enough and went to see a Rheumatologist. Now My numbers have cut in half. Don’t wait too long to get treatment. It can cause organ damage, stroke or hear attack. Inflammation is a serious thing. If you are not getting treated for your inflammation…ask your doctor.

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

Thank you! I am on a lot of Dr.Tennant plan. It wasn’t till they started treating me for Lupus that I got any relief. I truely believe that’s it caused all my inflammation. After all isn’t that what Arachnoiditis is? Inflammation of the arachnoid. By the time they found mine it was already Adhesive Arachnoiditis. Pain medication did not work for me. I started declining strong opioids. I felt like they had changed my brain chemistry and I no longer look forward to things or had any happiness. The medication I take for lupus has changed my life for the better. I think people Arachnoiditis can’t find doctors because of the scrutiny on writing prescriptions for opioids in the US. Steroids and lupus medication along with LDN has helped me more than any opioids. When I first was diagnosed with AA The only treatment was opioids. When I had to go to the emergency room due to excruciating pain from electrical shocks from just breathing they would give me a shot of steroids and anti-inflammatories and it was a miracle. I was on two different opioids during this time and they never touched the excruciating pain I had from uncontrollable electrical spasms from any movement in my body. When I went to see my rheumatologist that was the first thing I told her that medicine they gave me in the emergency room worked better than any opioids. When I told her I do not want any opioids she was so much more open to helping me with my plan to get relief. I guess I was lucky since I never got addicted to any of my pain medications. I guess I got sick and tired of being sick and tired and got off my behind and did something about it.

May 3, 2019 · Chronic Pain, alternative Treatment in Chronic Pain

Has anyone ever been treated by a Physiatrist? They treat chronic pain, rheumatology, spine and brain injuries and more. They don’t preform surgery. They do pain management and other rebab treatments.

Apr 5, 2019 · Any Adhesive Arachnoiditis members here? in Brain & Nervous System

Have you Goggled… practical pain management arachnoiditis? It has part 1 and part 2. It was written by Dr. Forest Tennant. This is very informative and has his recommend treatment plan.

Feb 5, 2019 · Facet Joint Injections - Anyone had success? in Spine Health

I had the injections and the side that is severe was very painful. I had that severe pressure like pain down my butt into my legs.

When I finally went to a rheumatologist and got the inflammation down. That has helped me the most. I have severe facet arthrosis and the doctor recommended a fusion. The Neurosurgeon will not do fusion on people with Ahesvie Arachnoiditis. I took strong pain medication for years. It took the edge off and I wasn’t myself.

My concern for taking Opiods for so long concerned me. I was worried about the effects it was having on my brain. I have a doctor friend who told me that I need to get my inflammation down. I made an appointment with a rheumatologist. They specialize in autoimmune and inflamed joints. I no longer take the strong pain medication. I stopped taking them after the inflammation went down. I can just try to give others the same advice my doctor friend gave me. Everyone is different and should always go by their doctors orders.
I would have never thought of going to a rheumatologist. I will tell you the rheumatologist asked me what took me so long to come and see her. When she looked at my blood work for the last few years. My inflammation markers had been climbing. They are now down for the first time in years.