Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@rwinney

Hi @chelle2001, nice to meet you!
Your feedback is much appreciated, thank you for responding. Great news that you are in with Mayo for consultations with a team of specialists. You will be well cared for, and I can imagine no stone will be left unturned.

Mayo doctors/specialists and the PRC play for the same team at Mayo however, what I learned from Dr. Sletten during my time of rehab was that some Mayo doctors do end up referring patients to the PRC for rehabilitation when there are just no more medical interventions to help chronic pain sufferers and doctors have nothing left to give from their specialty lanes. Procedures and medications run the course and become less effective. If that is what you find after meeting with your Mayo team in MN, and they don't suggest the PRC then yes, absolutely you can request a referral to the Pain Rehab Center.

Either way I'm ecstatic for you and have hope that your Mayo visit will be a step in the right direction. I'm happy as heck that you now are armed with more knowledge about CSS and the chronic symptoms you experience. I am not a doctor, but in my opinion, you experience central and peripheral sensory nervous systems upregulation which is CSS. Now you have important information in your back pocket. Knowledge is power! When do you head to MN?

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I head to Mayo on October 3-5 to meet with a General Practitioner and Rheumatologist. Then I have another trip scheduled on December 2nd to have a consultation with the Fibromyalgia Clinic in the Integrative Medicine and Health Department. I'm hoping to get my visit with the Fibromyalgia Clinic moved up sooner (fingers crossed). Who diagnosed you with CSS? Was it a certain doctor/department at Mayo?

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@moniesluv1974

Thanks so much for your help. I really appreciate it. I feel so bad for your condition. The pain since the Trigger point injections has eased off some. It's not as bad as it was but still uncomfortable. I go back To pain management on Tues. I'll see what they have to say and maybe they'll raise my pain meds so I can have some form of life.

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I sure pray they will raise your pain meds. Please keep us posted on your progress. God bless you.

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@bustrbrwn22

@mamawnebel thank you so much for an enlightened posting.

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You;re welcome. Just passing on some education I learned the long, hard way in hopes others can find relief faster than I did. God has been so good to me in leading me to a good pain management doctor. I hope Monique gets relief soon and others like her. To suffer for months on compete bed rest with no help in site is not acceptable with today's modern medicine.

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Some early studies on pain medication are showing promise. Now we will have to wait a decade or so before they may even meet the market.

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INTRO
I retired at 64 when I developed Osteoarthritis and Spinal Stenosis. Injections did not help. I see my pain doctor every eight weeks and take a very low dose of medication each day. To prevent further deterioration I restarted my Yoga practice from over 40 years ago. I now practice not only Ashtanga Yoga Asana but all eight limbs of Yoga which includes concentration and meditation. I've also adopted many Indian cultural practices including diet that has resulted in my losing 26% of my body weight since retiring four years ago. I now can wear the same size clothing I did when I was in high school and college and a restoration of energy and zest for life.

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@mamawnebel

Hi Colleen: My name is Shirley. I'm usually on the COPD group but this time I'm inquiring for my daughter, Kim, and I may not be in the right group so I'll just begin with telling you her symptoms and maybe you or someone out there can direct me or perhaps even help me.

My daughter is 53 years old. About 4 years ago she had a headache that brought her to the ER. She was put in a medically induced coma because the pain was so severe and was in ICU. She developed Sepsis which only worsend everything. Long story short, after many tests they found that her spinal fluid was leaking into her brain so she had to have her spinal fluid drained. She's now on medication for that and has been stable. Last week, very suddenly she was in excruiating pain in the right side of her head, face and neck and she was dizzy. This was very different than the pain she experienced 4 years ago. She went to Urgent Care thinking she was having a stoke. All her vitals were fine so the doctor ruled out a stroke. She's having a brain and head scan this week. So I guess my question is has anyone out there reading this ever experienced anything like this? Her symptoms are all on her right side and they include severe headache, sore throat, neck pain, jaw pain, ear pain, trouble swallowing food and liquids and dizziness. At Christmas last year she suddenly had severe pain in her right side that radiated from the right side of her ribs to underneath her right arm. I don't know if this is related but thought I add that also. She was diagnosed with gout about 2 weeks ago but that was in her left foot. Basically all her pain is in the head and neck area all on the right side. She was given muscle relaxers but they have done nothing to help her pain. She's not one to take the strong pain medication so all she's taking is Ibuprophen and keeping ice packs on her face. The ice packs give her some relief but only for a few minutes. She has a high tolerance for pain but this has brought her to tears. Her doctor is concerned but doesn't seem concerned enough to hospitalize her, especially knowing her background with the spinal cord leakage. Anyway, I told her about the group I follow and how wonderful they are and asked her if she minded if I put her symptoms out there and see f anyone has experienced anything similar.

So thank you all in advance for any information you can share. God bless you all and I pray you all are living a pain-free life right now.

Shirley, from Ohio

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Shirley, of course you are very worried for your daughter. This must be very scary for both of you and to have no answers. Has she been seen by a top neurologist?

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@colleenyoung

Shirley, of course you are very worried for your daughter. This must be very scary for both of you and to have no answers. Has she been seen by a top neurologist?

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Hi Colleen: No, she hasn't seen a top neurologist. In fact, none of the doctors she has seen has even mentioned her seeing one. So I will definitely tell her you have asked about this and suggest she mae an appointment with one. Oh, gosh, thank you so much for mentioning this. How and why do you think a neurologist coud help her? I feel like this is a lifeline to help for her and I thank you so much for reahing out to me I'm so concerned for her because her family physician doesn't seem interested in looking deeper into other alternatitives and my daughter doesn't know enough about the different spedialists out there and what they take care of in the body. So thank you so very much and God bless you. I will definitely let you kow what she decides to do.

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@paulieoneill4979

Hi everyone just wanted to reach out and see if anyone here has crps I was diagnosed with it April of this year after a tri mal ankle fracture and wrist fracture and have been struggling with the worst pains I've ever felt and need to find support groups or chats to talk about my condition

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Hi, tens is very good for this. It only works on 70% of people though. Very much helped a friend of mine with wrist CRPS. I use it for every type of pain thanks to screwed up nerves! Try to get one with the han cycle which is best for both acute and long term pain all at once.

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@moniesluv1974

I wanted to say that the trigger point injections took some of the edge off. I'm still in pain but not as much as before. It took almost 12 hrs to kick in but I can tell the difference. I hope it last atleast until it's time to see the doctor again Tues. Thanks

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So glad you've got some relief from the trigger point injections! Have you started water therapy?

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@turboc6

INTRO
I retired at 64 when I developed Osteoarthritis and Spinal Stenosis. Injections did not help. I see my pain doctor every eight weeks and take a very low dose of medication each day. To prevent further deterioration I restarted my Yoga practice from over 40 years ago. I now practice not only Ashtanga Yoga Asana but all eight limbs of Yoga which includes concentration and meditation. I've also adopted many Indian cultural practices including diet that has resulted in my losing 26% of my body weight since retiring four years ago. I now can wear the same size clothing I did when I was in high school and college and a restoration of energy and zest for life.

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@turboc6 Welcome! Wow, you're doing a great job with self-management of your symptoms. Thanks for the inspiration to our Connect community and very helpful tips on how you manage. Please always feel free to share what has helped you. It never hurts to have more tools in the pain management toolbox.

You make a valid point about injections no longer working. It happened for me too, and same with pain meds, they lost effectiveness and were actually amping up my pain through hyperalgesia. Have you considered weaning off medication considering you take a low dose already?

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