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.

Hello, my name is Sandra and I have chronic pain, pudendal and pelvic floor pain

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Hi, diagnosed with Grade 4 bone on bone kneecap arthritis with tibia involvement and nerve damage. Talk about being blindsided, one day I am fine and the next pain, unable to stand or walk without falling. Go for x-ray told it nothing serious. Seek out another doctor who then orders an MRI and is referred to a kneecap doctor, never knew one existed. Told not much can be done at this time except for "WD-40" injection because it the kneecap, the tibia and the nerves it will complicate matter.
The pain, everything I do involves pain; it hard to adjust. Anti-inflammatory gel and ice are the best they can give me, some days it helps and some days nothing. I have a knee brace that helps somewhat.
I am in my mid 40's, a caregiver and I work full-time.
Just trying to get through the day without..

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@lizny

Hi, diagnosed with Grade 4 bone on bone kneecap arthritis with tibia involvement and nerve damage. Talk about being blindsided, one day I am fine and the next pain, unable to stand or walk without falling. Go for x-ray told it nothing serious. Seek out another doctor who then orders an MRI and is referred to a kneecap doctor, never knew one existed. Told not much can be done at this time except for "WD-40" injection because it the kneecap, the tibia and the nerves it will complicate matter.
The pain, everything I do involves pain; it hard to adjust. Anti-inflammatory gel and ice are the best they can give me, some days it helps and some days nothing. I have a knee brace that helps somewhat.
I am in my mid 40's, a caregiver and I work full-time.
Just trying to get through the day without..

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@lizny I'm so sorry to hear of your pain as a retired nurse how are you working? One thing for your inflammation you can do if you can drink tea Trader Joes has a ginger-tumeric tea that helps with inflammation .The best to you

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@lizny

Hi, diagnosed with Grade 4 bone on bone kneecap arthritis with tibia involvement and nerve damage. Talk about being blindsided, one day I am fine and the next pain, unable to stand or walk without falling. Go for x-ray told it nothing serious. Seek out another doctor who then orders an MRI and is referred to a kneecap doctor, never knew one existed. Told not much can be done at this time except for "WD-40" injection because it the kneecap, the tibia and the nerves it will complicate matter.
The pain, everything I do involves pain; it hard to adjust. Anti-inflammatory gel and ice are the best they can give me, some days it helps and some days nothing. I have a knee brace that helps somewhat.
I am in my mid 40's, a caregiver and I work full-time.
Just trying to get through the day without..

Jump to this post

@lizny
Good Morning!
So sorry to hear about your issues.
At such a young age, I am sure this has put a big ding in your quality of life.

I am NOT in the medical field but I've been told more than once that 'nothing more could be done.'
I no longer take that as an anwer and I believe you shouldn't either.
My suggestion is to do a search on orthopedic surgeons, focusing on your issues.
I would also look into research hospitals like MAYO CLINIC to see what they are doing.
All this takes time, but I believe it will be worth it.

Good luck!
Here's to a pain-free day….
Ronnie (GRANDMAr)

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@lizny

Hi, diagnosed with Grade 4 bone on bone kneecap arthritis with tibia involvement and nerve damage. Talk about being blindsided, one day I am fine and the next pain, unable to stand or walk without falling. Go for x-ray told it nothing serious. Seek out another doctor who then orders an MRI and is referred to a kneecap doctor, never knew one existed. Told not much can be done at this time except for "WD-40" injection because it the kneecap, the tibia and the nerves it will complicate matter.
The pain, everything I do involves pain; it hard to adjust. Anti-inflammatory gel and ice are the best they can give me, some days it helps and some days nothing. I have a knee brace that helps somewhat.
I am in my mid 40's, a caregiver and I work full-time.
Just trying to get through the day without..

Jump to this post

Good Morning Sunshine…..WOW…talk about life hitting hard! Please keep on this site, there are folks here that I believe care. So many in pain. I don't know if this is revelant or not but when I was told by many Dr's. ,sorry we don't know what is wrong, or they had never seen anything like it, which by the way was a record of many Dr's I had gone to. Then my last attempt, just as I was accepting what I had been told,I went to see a neurologist. He hit on the problem almost instantly. I was sent to a spinal surgeopn and was told that I would be paralzed if I had not come in to have surgery. The surgery worked, the first time, then I had the second. And I had my life back.
So don't give up, keep asking and find that right DR. he or she is out there.
My prayers and positive energy are sent yoiur way.
Peace….J.J.

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@lizny

I'm sorry that you are experiencing this pain at such a young age. My recommendation is that you contact the Mayo Clinic Regenerative Medicine group and ask them about stem cell treatment for your knee. Stem cells could possibly be an answer for you since you are still young. In the procedure the doctors remove your own stem cells remix with your blood and insert them in the area of your degenerated knee. I'm not an expert and not a medical professional, but I have done some research and called the Mayo group about my own situation, but at 70 years my stem cells are too old to do much good.

Go to https://www.mayoclinic.org and then search for "regenerative stem cell therapy" to find out the information on stem cell research and how it works. I'm sure insurance doesn't cover these procedures at this point, but you may want to pursue it anyway. My understanding is that it can cost from $5,000 – $12,000 depending on what procedure they do, and where you have it done. Those costs may vary as its been a year since I last checked. People who have had stem cell therapy have said they had rather immediate cures in 2 + weeks, or it hasn't worked at all. Apparently the therapy doesn't work for everyone, but Mayo will assess your probability of success for it.

You have my best wishes for finding relief for your knee. As others here have said, don't give up; new therapies are always on the horizon and you may find relief for your pain and disability. Please let me know if you find hope with the stem cell therapy.

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@sandraperrotta

Hello, my name is Sandra and I have chronic pain, pudendal and pelvic floor pain

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Sandra, @sandraperrotta, welcome to Mayo Connect. I'm a Volunteer Mentor and am not a medical professional, therefore I can't make medical diagnoses or give medical advice. I do offer my experience, knowledge, and support for you and others on this thread. I had to look up pudendal to know what it is. If you are willing to give us more information about your situation, we can be more helpful for you.
I have a few questions that can get us started if you can share your experiences.

– What is your age?
– What was the initial cause of your pelvic pain?
– How long have you been experiencing this pain?
– Have you seen a physician/s about it and what have they recommended for relief of your pain?

If you haven't already done so, I recommend you do some research online about your issues. The link to Mayo Clinic information is:
https://www.mayoclinic.org/diseases-conditions/chronic-pelvic-pain/symptoms-causes/syc-20354368
The members of the Mayo Connect community are highly supportive of each other because we all understand chronic pain as we've all had it, or have it still. Many people offer information about what worked for them in trying to relieve their particular pain. We are also here just to listen if that's what you want. I'm looking forward to learning more about you.

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@lioness

@lizny I'm so sorry to hear of your pain as a retired nurse how are you working? One thing for your inflammation you can do if you can drink tea Trader Joes has a ginger-tumeric tea that helps with inflammation .The best to you

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Thank you. Going to try the tea, at this point willing to try anything. As for work, it difficult I try to pace myself and rest when I can. Thanks again.

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@lizny

Thank you. Going to try the tea, at this point willing to try anything. As for work, it difficult I try to pace myself and rest when I can. Thanks again.

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Lizny Thats all you can do is pace your self and rest when you can use ice also good luck

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Hi, I'm Sandy. I have been dealing with sciatic nerve pain for five months now. I am 56 years old. I was shoveling heavy, wet snow and knew something happened when I did it. I felt something in my side. Since then, I have been to the doctor several times. I was given muscle relaxers and told to take ibuprofen. That didn't work. The pain increased and went down my legs and my knees and shins experienced sharp stabbing pain. I started physical therapy and was prescribed naproxen and neurontin. This has not helped. My feet are swollen now. So, I started seeing a chiropractor. I have only seen the chiropractor once, but felt better after the first visit. This is just all so frustrating. Just mowed the grass and finished it up with crying in pain.

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Hi everyone. My name is Sheila and I have been diagnosed with fibromyalgia. I have joint pain and stiffness, mood swings, periods where I can't concentrate or think straight feel like I am in a fog. I keep thinking there must be something "real" wrong with me. Please don't be offended, I know this pain is real, and it has pretty much ruined my life,. My problem is that it seems like no one else thinks it is real. My doctors treat me like a drug seeker or malingerer, I am in constant pain. Sometimes it is worse but I always have pain. Anyone have any advice? I tried to be seen at Mayo but they turned me down said I could get care in my community. So ten years later still in pain it has just progressed and I still have no hope.

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@sheilagawne

Hi everyone. My name is Sheila and I have been diagnosed with fibromyalgia. I have joint pain and stiffness, mood swings, periods where I can't concentrate or think straight feel like I am in a fog. I keep thinking there must be something "real" wrong with me. Please don't be offended, I know this pain is real, and it has pretty much ruined my life,. My problem is that it seems like no one else thinks it is real. My doctors treat me like a drug seeker or malingerer, I am in constant pain. Sometimes it is worse but I always have pain. Anyone have any advice? I tried to be seen at Mayo but they turned me down said I could get care in my community. So ten years later still in pain it has just progressed and I still have no hope.

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Hi Sheila. Welcome! This is a very warm and helpful group. I am shocked, however, you were refused treatment at Mayo. Their reputation is stellar around the world. On another note, chronic pain is no picnic and learning to put yourself first is hard to do. Recently, I read a gem and have been trying to practice it. I'm not letting this pain define me. I'm Learning that we teach others how to treat us by not roosting on their comments, actions and/or attitudes. As well you will find many suggestions here and you just might find one or two that work for you. Best to you.

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