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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.

suzanne2 | @suzanne2 | Feb 8, 2021
In reply to @duxbury "My name is Anne and I am writing this for my 17 yr old son named..." + (show)
@duxbury

My name is Anne and I am writing this for my 17 yr old son named Rene. He has been on a horrible journey with pain that has lasted four years and involves his digestion, pelvic floor, eyes, back head and legs. It started with extreme and constant gut pain. After seeing a gastroenterologist, and having numerous tests including blood, urine, endoscopy, and colonoscopy, he was diagnosed with IBS. After consulting with a dietician and following a FODMAP elimination and reintroduction diet he identified his intolerance to lactose and other foods that he avoids. This helps but did not eliminate his pain. after about a year he developed severe penis pain and urinary issues which were eventually diagnosed as pelvic floor disfunction. Months of PT with Pelvic health specialists enables him to control the pain minimally. About a year later he developed dry eye which was treated with gland plugs, Restasis and FML steroid drops, which left him with no more dry eye, but instead and unbearable stinging and burning sensation on the surface of his eyes. Unable to look at screens, go outdoors or basically be in any lighted situation. We then were referred to the Rheumatology team who put him through tests, but found nothing and sent him to neurology where they diagnosed ocular migraines. After MRI, DHE, Lumbar puncture and ketamine, they determined they could not help him He began to lose all hope of being healthy again. He had to quit college and come home. I got him connected with the comprehensive pain clinic here and they referred him to Dr Pedram Hamrah where he was diagnosed with Corneal Neuropathy . DR Hamrah referred Rene to another doctor and he is getting tested for small fiber neuropathy. In the meantime Rene continues to get worse and be in more pain that migrates throughout his body. He is hopeless most of the time and we are struggling to keep up spirits. I fear he may give up al together. Is there any kind of peer support group for young adults with chronic pain that you are aware of? Or one for SFN specifically?

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@duxbury Don't know where you are located but I strongly suggest you contact a counseling center. They would be able to connect him with the proper support group in your area. If not a center a hospital/ medical center that deals with these issues should also be able to help you find some assistance. He definitely needs to have someone he can talk with about what he is going through .

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2 replies
duxbury | @duxbury | Feb 8, 2021
In reply to @suzanne2 "@duxbury Don't know where you are located but I strongly suggest you contact a counseling center...." + (show)
@suzanne2

@duxbury Don't know where you are located but I strongly suggest you contact a counseling center. They would be able to connect him with the proper support group in your area. If not a center a hospital/ medical center that deals with these issues should also be able to help you find some assistance. He definitely needs to have someone he can talk with about what he is going through .

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Thanks. We are in VT. He talks to a therapist twice a week. He is on a waiting list for IOP program to help him work on his behavior. He has never had problems but after everything he's been through, he has been diagnosed with severe anxiety and depression. His mood swings are horrific.

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duxbury | @duxbury | Feb 8, 2021
In reply to @frank1 "Hi, my name is Warren. I have dry eye disease, whose cause has yet to be..." + (show)
@frank1

Hi, my name is Warren. I have dry eye disease, whose cause has yet to be determined (after 6 years). I don't have pain in the sense of "hurt", but I do have it in the sense of irritation that is constant any time I have my eyes open. For that reason it seems I am more similar and sympathetic to people who have chronic pain than other types of disorders. People do not understand how it feels to constantly have sand in your eyes, or large foreign objects, and burning, and when one looks--there's nothing there! When I leave home or go outdoors, I find that wearing a snug-fitting pair of high-school chemistry lab goggles help keep my eyes from drying out so fast helps, but it is humiliating, and you should hear the comments some people make! I've said enough for now, but I am so glad to be part of this group. I hope I can help some of you. Thanks. Warren

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Hi Warren, please look into Corneal neuropathy. This is a relatively new diagnosis. We had to travel to Boston to get tested. There is some medical journal articles that explain it best. I tried to add a link, but I am not allowed to in this sight. The diagnosis can only be made after using a special microscope to look at the surface of the eye. We saw many opthomologist before finding Dr Pegram Harrah who has this microscope. There are only eight of them in the world. The treatment includes using tears made out of your own blood to regenerate the nerves in the cornea.
It turns out that my son may also have Small fiber neuropathy as well, causing migrating pain all over.

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duxbury | @duxbury | Feb 8, 2021
In reply to @jerid "Dear Anne, I am so sad to hear of all the agony your young son has..." + (show)
@jerid

Dear Anne,
I am so sad to hear of all the agony your young son has been facing. I want to suggest you purchase a book called "Say Good-bye to Illness" by Devi S.
Nambudripad.She is a M.D., D.C., L.Ac, Ph.D, (Acu) This book is a revolutionary treatment for Allergies & Allergy-Related Conditions. It tells you of Nambudripad's Allerty Ellimination Techniques or NAET. Once you read about this treatment and purchase her book you can look for a NAET physician in your surrounding area. This treatment saved my life. I also was diagnosed with IBS 30 years ago. I also went through a scratch test of various foods on my back to find out what I was allergic to. It ended up that I could only eat 10 foods, which I did for probably 10 years and I felt amazing. All of the inflammation and pain left my body. Then a lady that I knew told me of this NAET treatment that would allow me to be treated for all the various allergic foods I was allergic to. The beautiful thing about this treatment is it is non evasive. I am not going to go into the procedure because it would take too long. I need you to do your home work and ready about this amazing treatment.
https://www.amazon.com/s?k=naet+guide+book&crid=28WE749HL54D6&sprefix=NAET%2Caps%2C186&ref=nb_sb_ss_ts-doa-p_8_4
to find the book.
I continue to use this wonderful allergy treatment in my life even today. I seem to have a knack for developing allergies in new things. This does not mean your son will. Many people once treated will be good for life. To be honest I am good to most things, but once in awhile something will creep in and my husband will give me a treatment. We had to learn this treatment because we moved from our area and there is no practitioner in our area.
My reaction to the allergen has always effected my digestive tract, headaches, fatigue and brain fog. You will be amazed as to all the things a person can be allergic to. I could write you a book on it, but I won't. Most family physicians know nothing of this type of allergy treatment. I see where you said he continues to get worse. Please do not hesitate with this info.
I can give you the name of a physician in Bend, OR, but I don't know if you are in for traveling or where you live. Let me know.
Remember it is non-evasive. No drugs or shots. If you want more information please let me know. This book is the best start I can give you. Good luck. I will pray for you and Rene
Another method too is this. I went to a allergy clinic in Seattle WA that did very specific blood test and various other test that I do not remember and they came up with the same allergies for me. It is a very specific series of blood test. They could not remove the allergens from my body, it was only to stop or stay away from whatever bothered me. NAET is great and so is my doctor in Bend, Oregon. Let me know if you want his business number. He is VERY GOOD at what he does. The BEST I have ever been to.
I just don't want anything to happen to Rene. Jeri

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Thanks for this information. I will look into it.

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duxbury | @duxbury | Feb 8, 2021
In reply to @suzanne2 "@duxbury Don't know where you are located but I strongly suggest you contact a counseling center...." + (show)
@suzanne2

@duxbury Don't know where you are located but I strongly suggest you contact a counseling center. They would be able to connect him with the proper support group in your area. If not a center a hospital/ medical center that deals with these issues should also be able to help you find some assistance. He definitely needs to have someone he can talk with about what he is going through .

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Thak you. Rene is currently seeing a therapist and will begin with an IOP program soon.

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migizii | @migizii | Feb 8, 2021
In reply to @annec2525 "What medication do you take for sleep if you don't mind me asking? I think all..." + (show)
@annec2525

What medication do you take for sleep if you don't mind me asking? I think all the things you do make sense and probably help.

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The sleep specialist I see prescribed Clonazapan...I think that’s how you spell it. If I participate in the three week pain program at Mayo, they said I would not be able to take this medication. I was scheduled to go but broke my foot....however, I told the staff I didn’t think I would stop the medication because I finally get good sleep. It has been so many years of poor sleep. As it turned out, I haven’t reapplied to attend the program, although my chronic pain persists.....but I always look forward to a nice night of sleep and waking up rested and ready to start a new day.....feeling grateful.

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veda | @veda | Feb 9, 2021
In reply to @gingerw "@veda Ouch! You have had a lot to deal with. It make take a bit of..." + (show)
@gingerw

@veda Ouch! You have had a lot to deal with. It make take a bit of time for the ointment to work. If the discomfort is more than you think you should have to deal with, contact that same dr and find out if there is something you can do for that side effect. Kinda like "bark is worse than the bite", right?
Ginger

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TY ginger. I'm about at my whit's end. I'm so tired and the pain keeps me from getting rested. I've got so much medical and legal stuff for myself that I'm having trouble keeping up with and I forgot to mention the stress and my migraines. I can't stay focussed. It seems I'm standing still and can see everything continuing on and I can't keep up. I'm in and out of my life just like I am trying to finish this letter 2 days ago and it's frustrating as hell but I can't seem to snap out of it for myself. The most important thing I know right now is that I have to keep my stents open and I was told I may not survive another heart attack. The pain in my toe is waring me out and I was wondering if the acid my Dr. used is sulpuric because I'm alergic to sulphurs. I'm begining to think he may have been careless because I'm always sure to list all my allergies. I've never had this procedure before and was reaching out for somebody to help me understand this better. It feels like a hot iron is being held on my skin and an intense burning and throbbing pain. It's so ironicle that I've always been depended on as the caregiver of my love ones and my brain is so wired that way that its too hard for me to snap out of it, but I don't have anyone to care for me. I have to depend on outsiders I'm supposed to be meeting a theropist again. I have to fight my employer for wrongful termination during pandemic and cheating me out of wages and covid benefits. I'm a Hero dang it. I can't get my unemployment, it's all screwed up. I'm remembering all this right now and I need to get on it. It's just so much on my plate and I can't help worrying about everyone else.

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4 replies
woogie | @woogie | Feb 9, 2021
In reply to @veda "TY ginger. I'm about at my whit's end. I'm so tired and the pain keeps me..." + (show)
@veda

TY ginger. I'm about at my whit's end. I'm so tired and the pain keeps me from getting rested. I've got so much medical and legal stuff for myself that I'm having trouble keeping up with and I forgot to mention the stress and my migraines. I can't stay focussed. It seems I'm standing still and can see everything continuing on and I can't keep up. I'm in and out of my life just like I am trying to finish this letter 2 days ago and it's frustrating as hell but I can't seem to snap out of it for myself. The most important thing I know right now is that I have to keep my stents open and I was told I may not survive another heart attack. The pain in my toe is waring me out and I was wondering if the acid my Dr. used is sulpuric because I'm alergic to sulphurs. I'm begining to think he may have been careless because I'm always sure to list all my allergies. I've never had this procedure before and was reaching out for somebody to help me understand this better. It feels like a hot iron is being held on my skin and an intense burning and throbbing pain. It's so ironicle that I've always been depended on as the caregiver of my love ones and my brain is so wired that way that its too hard for me to snap out of it, but I don't have anyone to care for me. I have to depend on outsiders I'm supposed to be meeting a theropist again. I have to fight my employer for wrongful termination during pandemic and cheating me out of wages and covid benefits. I'm a Hero dang it. I can't get my unemployment, it's all screwed up. I'm remembering all this right now and I need to get on it. It's just so much on my plate and I can't help worrying about everyone else.

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Veda, have you ever been diagnosed as bipolar--everything piles up, then sometimes we think we are superwoman and the hurrier I go, the slower I get. That's an old saying--maybe it's not even right. I used to be so organized, I acted like superwoman, kept a place for everything and everything in it's place. Well, that was then and this is now. My house is so unorganized! Our filing cabinet lock quit working so I decided to use the shredder and shred all the outdated papers. Well, some of them are not for the kids to be reading, so I want to get this done before they start coming over again. My house is such a mess! I have toys I want to separate and give to the local organizations-- Well, I don't think they want donations at this time so here they are. I have no babies or little ones to come and play. My GP has it down that I am depressed. Well, who wouldn't be? I have so many aches and pains and my pain doctor keeps taking pills away from me and it's causing muscle spasms. My niece had her toenail removed and the doctor put something on her toe which caused her more pain than the back surgery she had (she said). She was allergic to it, I think. Tell your doctor how bad your toe hurts. Sometimes my big toe has such pain, it wakes me up in the night. (that is, should I go to sleep) I get up every hour or 1/2 hour to pee all night long. The doctor told me to use a catheter before bed but I don't know how to insert it. So, I am like a walking zombie whose house is quite the mess--like I feel. I have a husband but he thinks the outside is his to care for and the house is mine to care for. He hates doing anything in the house! He does empty the trash! I feel for you. My God bless you from the crown of your head to the soles of your feet. He is the great healer. Woogie

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Erika | @erikas | Feb 9, 2021
In reply to @veda "TY ginger. I'm about at my whit's end. I'm so tired and the pain keeps me..." + (show)
@veda

TY ginger. I'm about at my whit's end. I'm so tired and the pain keeps me from getting rested. I've got so much medical and legal stuff for myself that I'm having trouble keeping up with and I forgot to mention the stress and my migraines. I can't stay focussed. It seems I'm standing still and can see everything continuing on and I can't keep up. I'm in and out of my life just like I am trying to finish this letter 2 days ago and it's frustrating as hell but I can't seem to snap out of it for myself. The most important thing I know right now is that I have to keep my stents open and I was told I may not survive another heart attack. The pain in my toe is waring me out and I was wondering if the acid my Dr. used is sulpuric because I'm alergic to sulphurs. I'm begining to think he may have been careless because I'm always sure to list all my allergies. I've never had this procedure before and was reaching out for somebody to help me understand this better. It feels like a hot iron is being held on my skin and an intense burning and throbbing pain. It's so ironicle that I've always been depended on as the caregiver of my love ones and my brain is so wired that way that its too hard for me to snap out of it, but I don't have anyone to care for me. I have to depend on outsiders I'm supposed to be meeting a theropist again. I have to fight my employer for wrongful termination during pandemic and cheating me out of wages and covid benefits. I'm a Hero dang it. I can't get my unemployment, it's all screwed up. I'm remembering all this right now and I need to get on it. It's just so much on my plate and I can't help worrying about everyone else.

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@veda To say that you have a lot on your plate is a gross understatement. You are right, you must worry about yourself at times like these and ask for help from those you love. I know it is hard but it's okay to ask for help. You deserve that.

I'd like to extend my welcome to Mayo Clinic Connect.

You have pain, medical issues, legal issues, money issues, and you said that you do not have anyone to care for you but rely on outsiders.

If you were not going through such pain, I might suggest prioritizing and trying to complete one task at a time but how can you do that with constant pain?

Below I have linked the Neuropathy Group. You may wish to scroll through discussions and posts to find members that can support you.
- Neuropathy https://connect.mayoclinic.org/group/neuropathy/

As I mentioned above, it's hard to know which issue you should tackle first or which few you should address first. Am I correct in thinking that your health/pain is the highest priority? May I ask if you have any ideas? Can you identify what next steps?

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Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 9, 2021
In reply to @veda "TY ginger. I'm about at my whit's end. I'm so tired and the pain keeps me..." + (show)
@veda

TY ginger. I'm about at my whit's end. I'm so tired and the pain keeps me from getting rested. I've got so much medical and legal stuff for myself that I'm having trouble keeping up with and I forgot to mention the stress and my migraines. I can't stay focussed. It seems I'm standing still and can see everything continuing on and I can't keep up. I'm in and out of my life just like I am trying to finish this letter 2 days ago and it's frustrating as hell but I can't seem to snap out of it for myself. The most important thing I know right now is that I have to keep my stents open and I was told I may not survive another heart attack. The pain in my toe is waring me out and I was wondering if the acid my Dr. used is sulpuric because I'm alergic to sulphurs. I'm begining to think he may have been careless because I'm always sure to list all my allergies. I've never had this procedure before and was reaching out for somebody to help me understand this better. It feels like a hot iron is being held on my skin and an intense burning and throbbing pain. It's so ironicle that I've always been depended on as the caregiver of my love ones and my brain is so wired that way that its too hard for me to snap out of it, but I don't have anyone to care for me. I have to depend on outsiders I'm supposed to be meeting a theropist again. I have to fight my employer for wrongful termination during pandemic and cheating me out of wages and covid benefits. I'm a Hero dang it. I can't get my unemployment, it's all screwed up. I'm remembering all this right now and I need to get on it. It's just so much on my plate and I can't help worrying about everyone else.

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@veda Might I suggest you start writing things down as they occur to you. Don't worry about a particular order to the list, right now. Things that are a concern for you. Later, go back and see what you feel is the most important to focus on. Can you call the pharmacist, or look up online, the ingredients of the acid that is causing so much problem? Wouldn't that be quicker that calling the dr? If you don't have the name, then call his/her office to get it from the assistant.

Let us know what you find out, please.
Ginger

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