Chronic Pain members - Welcome, please introduce yourself

@bustrbrwn22 I have not been posting much on this thread, but read the posts. This is a great idea, to have your husband video your spasms and all the issues. How can a medical dr refuse to address an issue they can visibly see when it happens? Put it on a spare thumb drive, that can be played back on his laptop, and become part of your medical records. Save a copy for yourself, too!

You have a lot of people on your side!
Ginger

@johnbishop Thanks so much. I have accessed the sight and will work on the Tools for the Visit as my eyes allow. Thank you for taking the time to find resources for me.

@rwinney. As hard as itt is to hear you are spot on. I am trying to learn to portion my time and allow time for spasms as well. Today I was able to walk up the basement steps without my legs giving out on me. Yesterday I could only walk a couple steps then rest. It means so much to me that someone believes me and it has made me more determined to make stretches and light weights a priority. I want to start at 15’lbs but now realize I have to accept who I am right now. 3 lbs is better than 3 weeks ago when I couldn’t lift my hands over my head. Thank you all so much. Please pray that my 3 week checkup shows that my eyesight has not worsened. It’s in 2 weeks.

@rwinney. Thanks for taking the time to respond and the recommendations are spot on. I tend to ruminate over if I hurt someone’s feelings, could have done something better etc. I can only use my eyes a short period of time. Unfortunately the suspicion of the most recent specialist is that LP is also now in one of my ears and on my scalp, could even be in my nose based on symptoms and initial visits to drs. Not a pretty way to end up but I sure hope when it get too bad I am offered something to kill the nerve pain. I went through a 4 hour stretch today where my eyes had a deep, deep pain and I was spasming so my husband had to attend to me. The dark bedroom was too bright for me so I had to wear sunglasses. I was so worried no one would respond or support me - everyone here has serious issues. I lost the use of my legs last night while starting to do laundry and they didn’t become useful again this morning but then the all over spasms started. I keep asking my husband to videotape it because doctors don’t believe me. Oh well, I am so uplifted and can’t thank you enough!

Wow! You really are doing a great job in recognizing effective ways to lessen pain, anxiety, and stress for yourself. Congrats on getting up those stairs! Slow and steady wins the race, so does being flexible. If one day you can't do as much, that's ok, the next day you can always try again. I find my health to be a game...sometimes I win, sometimes I lose, and that's ok.

I love that you are working on your physical health. That's so very important so your body doesnt decondition, making pain and brain symptoms worse. Slow and steady on the weights and reps. Gradual build up from 1-5 pound weights is all you need to start. Perhaps you will reach a plateau and that's ok too. Any progress is good progress.

I'm wishing you the best with your next eye appointment. Will you report back your findings?

@bustrbrwn22 A few years ago, when I was feeling my head mildly twitch, my neurologist actually recommended it being being videod.

@bustrbrwn22 - Hoping your appointment goes well and provides some help for you.

@athenalee What a great posting! Your situation is so much more serious than mine so I appreciate you reading and responding to my story. May I ask where you received your great care? I hope you continue to be healthy and well.

@bustrbrwn22, I can’t imagine your struggles, but as long as you can remain positive that’s the important thing…along with exercise and eating well! I figure if I can’t always rely on medical providers I need to rely on myself!

Yes, I wish my encounters with the rheumatology department at Dartmouth Hitchcock would have been anywhere close to the transplant team at Lahey Medical Center. I’ve given up on them.

The team approach seems to work well at transplant centers. I wish it would be more widely adopted for other illnesses, including autoimmune diseases. I know Mayo and John Hopkins seem to treat other diseases using team referrals. I’ve been researching how other institutions treat Sjogren’s Syndrome, which can require several different specialties.

I hope you’re making progress with your providers.

Hello @bustrbrwn22. I'm hoping you remember me from the neuropathy group. I went to Mayo's Pain Rehab Center for 3 weeks last October, then took "me time" to work the program. Now, here I am! Back to support members like yourself.

Let me first start by saying how proud I am of you for reaching out at the times you most need reassurance, empathy and support. I noticed that about you when I used to read your posts.

I'm very sorry for the plethora of issues you have, and greatly understand the feelings of devastation you're experiencing. It's very hard to not go down the rabbit hole by rehashing the past, questioning past decisions or missed diagnoses. It creates wasted energy and fires up your nerves, creating enhanced pain by triggering your central nervous system. There's a phrase at PRC called "don't access the network". It's a hard thing to get used to doing, but I strongly encourage anyone to make their best attempt at this change.

Some other helpful tools and coping mechanisms I learned at PRC were:

1. Focus on controlling the things you can

2. Pull in the view finder and think about the next 5 minutes, do not
get too far ahead

3. Focus on abilities, not limitations

4. Practice techniques that relieve stress (like the videos you watch
that @lorirenee1 recommended - she's a smart cookie!)

5. Learn to shift your focus away from pain, through distractions,
nature, comedy, children, pets

6. Reduce or omit medications that are not medically necessary by
speaking with your doctors and asking what may be enhancing
your pain

7. Eating a nutritious diet and getting the sleep your mind and body
needs

8. Don't let feelings drive the bus! Focus on facts over feelings,
especially when working with your doctors

I certainly hope that when you're up to reading this post, it brings reassurance to you that you are not alone. Maybe we all have different things going on, but at the end of the day, Connect is here for you.