Arachnoiditis: Looking to talk with others

Posted by arannek72 @arannek72, Jul 3, 2018

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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@archie2

Hi— don’t worry, all AA stories seem to be long I was Dx‘d in 1978. Truth is, AA is caused by trauma from surgery to the spinal cord, blood in the surgery wound, detritus from imaging fluid and aging. It can change, mutate and get worse. I find that the pump helps a lot of back pain from nerve damage, but not so much with AA. Thus the use of SCS as adjunct modality of treatment. I have Dilaudid in my pump _ has worked well for 18 years. States that limit the range of analgesics and want you to subsist on methadone and cognitive approach’s to pain control mean well, but don’t understand AA— they need to bring the best meds because AA is the worst.
Please keep in contact— hard to hurt my feelings or surprise me after 50 years of AA. Don’t give up! You have a good grasp on the disease— educate your local Pain Mgt physician— I’ve done it. Done give up, get active and become your own best advocate.

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have an appointment with a new pain specialist, for evaluation for the pain pump. Since i have hardware from C3 thru my sacrum, & a DRG stimulator as well. I need pain control for my arms, thoracic spine, down thru sacrum & severe neuropathic pain down both legs. Hope i don't get a strange look, from new doc, when i tell him the scope of my pain! May need oral drugs, as well. Since i have severe shoulder pain (need a new shoulder for 13 years) But i am not willing to have any more surgeries

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@gerisues

Hi Rachel. I was diagnosed with arachnoidiitis 28 years ago and was single at the time. I also did not know anyone who had it at the time of my diagnosis. 12 years ago I met and married a very special man.He was widowed and spent several years taking care of his late wife. I told him up front about my condition and that I really had no idea if I wanted to be in a relationship with what I dealt with from the arach every day. He was dead set on us being together, so within a few months we were married. I asked him his point of view and he said "I get pretty frustrated with the lack of interest in the condition in the medical field and that my wife suffers so much. I have never had to do hands on care for her, but I am always trying to find ways for her to get the help she needs. I feel like "we" have arachnoiditis because it affects us both when it comes to our relationship. I watch her suffer so much and I would do anything to take this pain and suffering from her if I could. She is such a cheerful and upbuilding person, she makes me feel loved and cared about despite her pain and I could not imagine being without her. If you truly care for someone it is not about what their health is, it is about making the time you have together worthwhile and adapting to each other's needs. I know she would feel the same for me if I was the one who had the health issue. She does not know one minute to the next what she is going to be able to do so we plan activities with that in mind. She has to use a scooter when we go places that require alot of walking so we research ahead of time if they are handicapped friendly. I learned to do therapeutic massage and bought a massage table so that I could ease some of her muscle cramping using these techniques. Bottom line, if you both truly love and care about someone, you are going to adapt around their needs just as they are going to do for you. You both have to be willing to change how you do things so as to help each other. Is it difficult watching someone you love suffer, YES. Do I worry about her, YES. You have to be strong enough to handle that. You cannot just selfishly leave them behind while you go off and do your own thing. I saw that happen in my own family growing up and I was determined not to make that same mistake. It needs to be a family affair with activities that include my wife, done in a way that she can do it. If others are not willing to work around that then we have no use for them. She has made so many changes to accommodate me as well. I don't know if this helps or not but these are my thoughts." Well I hope his thoughts are useful to you. If you have any questions, I will ask him and he can be more specific. I am sorry for what you are going through, it is not an easy condition to live with.

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Do U have a twin?? I haven't been able to even find a date. When a guy see's my walker, it's an automatic no. U must be that one in a million who really cares & be genuine & deeply understanding. Tried dating for 2 years with no results. But then, i can hardly get out of bed, most days,,, The lack of just some one to talk to, or maybe get a lunch, dinner. Even though live in a retirement community, i feel so alone & lonely. My participation in activities, has gone from a lot, to nothing. I keep signing up for stuff, but can't get up, due to severe pain, numbness etc.

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@laurenseavertson

Have found that this condition has constant new, symptoms, some quite bizarre. Afraid to tell any doctor, because fear they will think i'm crazy. But i have taken so much prednisone, over the years, & i know this drug does bad things to skin & all connective tissue, below. But it's very disconcerting, & most doctor's would find highly, unusual?

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large support groups for arachnoiditis, on Facebook. I've been locked out of my account for suspicious activity (sure it was me) But have not been able to upload a new ID, with numerous attempts. But go to Facebook. Sure u will get more support...hundreds with this condition

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