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.

Hi my name is Julie. New here, suffering from psoriatic arthritis, RA, Lupua, sjogruns Sp?,) Fibro, Ddd, lung lesion and fungal issues. Pain is relentless and walking difficult. I really look forward to meeting other members. Good day to everyone.

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@marcia_pez

Hello, my name is Marcia and I am 66 years old. I am facing the possibility of spinal fusion surgery because I have chronic pain and stiffness. My previous MRI of a few years ago showed spinal stenosis and spondylolisthesis. Another MRI scheduled for Jan 17 because I am getting progressively worse and have been told that I am a candidate for surgery. I am a caregiver for my husband who just went through a year of hell with CHF, defibrillator/pacemaker implant, and three surgeries for bladder cancer, and subsequent chemo. I’m just not sure what to do about surgery for myself, given his weakened condition and high anxiety. I know that assisting him with bathing and dressing, etc., does not help my back, nor does cleaning the house or even walking through a grocery store. Does anyone have any suggestions? I fear losing more mobility permanently.

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Hello @marcia_pez, welcome to Connect. Thank you for sharing a bit about yourself and your concerns regarding spinal stenosis and fusion. It sounds like you are faced with a difficult decision regarding your own health and the fact that you are a caregiver for your husband.

Here are some discussions in Connect that you may find relevant to your topics:
– New to Chronic Pain Discussion Board, http://mayocl.in/2ifCK1l (includes members with spinal stenosis)
– Searching for Adults living with scoliosis, thoracic stenosis, http://mayocl.in/2jA1y63 (brief but includes a mentor with caregiver experience as well)
– Meet fellow caregivers, introduce yourself, http://mayocl.in/2j1ZGlI

These are just a few places to start that may help you find other members who have or are experiencing things similar to yourself.

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Julie, you have a rough one. Have your doctors checked you for various forms of amyloidosis? What you describe is rather typical for ATTR, excessive serum free light chain deposit disease, and many others. It is still a rough road, the shock absorbers are better if you know what is happening.

Liked by jewel8888

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I’m Emily and I have thorasic back muscle spasms 24/7, fibromyalgia and a knee replacement that has severely hurt since my knee was revised.

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I have been suffering with Neuropathy chronic pain in my feet for about 8 years. I am hoping that being involved in discussions with others may help me emotionally and also finding relief from the experience with others.

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@oldkarl

Julie, you have a rough one. Have your doctors checked you for various forms of amyloidosis? What you describe is rather typical for ATTR, excessive serum free light chain deposit disease, and many others. It is still a rough road, the shock absorbers are better if you know what is happening.

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Thank you for your reply oldKarl,

i read about it the past few hours and will be talking to my rheumatologist dr in a few weeks. He is exteemely concerned, sent me to other specialists, even had a lung biopsy. Its in my left upper lobe, the surgeon i saw said the biopsy another dr did was inconclusive so if it doesnt get any smaller by spring ghe wants to perform surgical biopsy. The ATtR diseases makes sense in my case, GI, lower back pain at kidneys, bladder infection last year caused sepsis and new horrible shellfish allergy. The overall weakbess, neuropathy, hand, and leg pains are worse than my normal arthtitis pains. Ive been a good patient keep trying to be positive and, take short walks on beach when i can. Your reply is so appreciated, many thanks!!! Hoping you are feeling as well as can be yourself.

Julie

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@marilyn624

Hi, I’m a newbie. After a fibromyalgia diagnosis, I had the great misfortune of a MRSA infection which involved 18 days in the hospital and a very close call. Survivor is my middle name and point of pride. But, after 7 years, one area of pain in my back is still devastatingly unbearable. Nothing helps and I feel very isolated with this issue. Still manage an otherwise happy life with great spousal support. hill

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Hi Marilyn, im new here too. I was duagnosed with fibro about twenty years ago. It sas it good days and bad days. So sorry you gad to be in hospital im sure it was most difficult. Hoping and praying you get to feel better soon. I use ice and heat alot to help with mine. Ive also been doubling my socks and wearing slippers to add cushion, its been helping.

Take care and talk soon,
Julie

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@emme

I’m Emily and I have thorasic back muscle spasms 24/7, fibromyalgia and a knee replacement that has severely hurt since my knee was revised.

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Hello @emme, welcome to Connect. Thank you for introducing yourself to the other members of the Chronic Pain group.

Here are some other discussions that you may find relevant regarding the ailments you explained above and can meet other members experiencing similar things:
– Fibromyalgia Pain, http://mayocl.in/2hgUGcv
– After knee replacement surgery, http://mayocl.in/2bVSUwB (members also discuss back spasms in this discussion)

I look forward to seeing more posts from you Emily.

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@philio66

I have been suffering with Neuropathy chronic pain in my feet for about 8 years. I am hoping that being involved in discussions with others may help me emotionally and also finding relief from the experience with others.

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Hi @philio66, and welcome to Connect. I am sorry to hear about your suffering with peripheral neuropathy. You came to the right place to get involved in discussions with other members, we are glad to have you!

Here are a few discussions I think may help you get started:
– Anyone here dealing with peripheral neuropathy? http://mayocl.in/2aWCYXq (includes many active members for you to Connect with)
– Swollen foot, http://mayocl.in/2iD43jN (some members discuss neuropathy, but not as many as the above conversation)

These conversations should help you get started in meeting other members, I look forward to seeing more posts from you in the near future!

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@jewel8888

Hi my name is Julie. New here, suffering from psoriatic arthritis, RA, Lupua, sjogruns Sp?,) Fibro, Ddd, lung lesion and fungal issues. Pain is relentless and walking difficult. I really look forward to meeting other members. Good day to everyone.

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Hello @jewel8888, welcome to Connect. Thank you for telling the other members the ailments you have to deal with.

Here are some discussions taking place on Connect that are relevant to your listed symptoms and where you can meet other members experiencing things similar to yourself:

– Chronic rib & feet pain, http://mayocl.in/2iZsDfG (it is a brief discussion but includes a member who has both psoriatic and RA that you may want to Connect with)
– Alcohol, http://mayocl.in/2jgkPpE (don’t let the title scare you off, it is in the Autoimmune Diseases group and is in regards to having lupus)
– Sjogrens, http://mayocl.in/2gYI8Uv
– Fibromyalgia pain, http://mayocl.in/2hgUGcv
– Lung Cancer – Improved diagnosis, http://mayocl.in/2ewF3sB

I hope that these discussions provide a good place to start for you. I look forward to seeing more posts from you in the future.

Liked by jewel8888

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@emme

I’m Emily and I have thorasic back muscle spasms 24/7, fibromyalgia and a knee replacement that has severely hurt since my knee was revised.

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@emme I have fibro also and I only have one knee left which is bone on bone now. I have avoided a knee replacement as they tell me you can not get down on one knee on the ground and I do that a lot since I am a leg amputee. Also I do not know if replacement is good for me or not. Good luck. 19lin

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@marilyn624

Hi, I’m a newbie. After a fibromyalgia diagnosis, I had the great misfortune of a MRSA infection which involved 18 days in the hospital and a very close call. Survivor is my middle name and point of pride. But, after 7 years, one area of pain in my back is still devastatingly unbearable. Nothing helps and I feel very isolated with this issue. Still manage an otherwise happy life with great spousal support. hill

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@marilyn624 Don’t feel alone most of know some of what your going through. I have fibro as well as other stuff including back pain, but it mostly comes out as sciatic nerve pain in my missing leg and when it hits it is the worst. It is good that you have home support. 19lin

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Thanks Justin. I have reached the point that was predicted a few years ago, that eventually opiates lose their effectiveness the longer they are used. That is exactly where I am right now. I am going to do research for medical marijuana. Minnesota has approved it’s use but I am not sure who to contact. The article I read said that your doctor will not prescribe it and it seems that you must be an “extreme” case to be able to get it. Thank you for this site.

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@philio66

Thanks Justin. I have reached the point that was predicted a few years ago, that eventually opiates lose their effectiveness the longer they are used. That is exactly where I am right now. I am going to do research for medical marijuana. Minnesota has approved it’s use but I am not sure who to contact. The article I read said that your doctor will not prescribe it and it seems that you must be an “extreme” case to be able to get it. Thank you for this site.

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Good luck getting medical Marijuana in MN. I am a patient at United Pain Clinic, and I have a PCP and a neuro. NO ONE wants to send me to a clinic or pharmacist for medical Marijuana. No one wants the liability. It is also prohibitively expensive. I am 15 years on opiates, which they want me to stop, but they have no alternate solutions for breakthrough pain. I do it all, from biofeedback, group therapy, psych, psychologist, PT, acupuncture, dry needling, bitox, nerve ablation, steroid injections, nerve blocks, essential oils, you name it and I do it. There is no THC in Minnesota's medical Marijuana, but the Feds just doubled down and now want to classify hemp as a schedule I drug. My oxy is a schedule 2. Don't get your hopes up on MM. I wish I had a more positive experience to relay, but I only have my truth. I wish you all the best.Laurie Demit Rusin

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@philio66

Thanks Justin. I have reached the point that was predicted a few years ago, that eventually opiates lose their effectiveness the longer they are used. That is exactly where I am right now. I am going to do research for medical marijuana. Minnesota has approved it’s use but I am not sure who to contact. The article I read said that your doctor will not prescribe it and it seems that you must be an “extreme” case to be able to get it. Thank you for this site.

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Hi Laurie, thanks for your input. My doctor would refer me somewhere but it doesn’t sound like Minnesota is an option right now. I am visiting Phoenix in February and they have marijuana clinics which have been around for a while. I am going to set up an appointment there. If that doesn’t work out I may just spend a week in Colorado and test it “legally” there. Whatever happens I will let you know. I also have been on opiates for quite a while but the effectiveness is not very good anymore. Doctor wants me to lower intake also but there is NO other option. The Mpls company Medtronic makes two different spinal cord implants, one is a TENS type and one is a morphine pump. My Neurologist says they are “last resort”.

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