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, Michele. I have great feeling for your daughter, as I have been through much of the same. I do not for a moment think she has the same stuff I do, but the search is much the same. My search for dx has lasted about 50 years. The trick for dx (diagnosis) is to find a series of tests which will steer you on to the right path, and on the road to the proper dx. I.E., I have been tested for, and then ruled out, fibromyalgia, lymphoma, chronic fatigue, and 20 or 30 other diseases of all kinds, from polio to malnutritions. Time after time, some doctor or nurse has said “Eureka!” Then later, they said, “Ooops, sorry…..” Finally, 18 months ago, as a sort of off-hand remark, a lab tech with almost no experience happened to say “Ever have your protein tested?” Well, that was the start, and in the intervening time I have my protein, kidneys, heart and everything else tested and retested, and I think I have at least part of the truth. Systemic, primary, amyloidosis of some sort. There is still more testing to do, but I feel good about the start. So my suggestion sounds easy. Ask everyone you see. Start with a basic test of some system(s) that is going bad. Mine were liver, kidney, pancreas, and cardiac. After each test, make lists of what is ruled out, what is ruled possible, and what should come next. Organize…Organize… her medical work. She must take control, and lead the doc around by the ring in the nose. Because I have many of the same symptoms, I would start with SERUM Free Light Chain Assay, 24-hour urine collection and test. If the sFLC returns negative for kappa and lambda proteins, and the urine does the same, that pretty much rules out any serious problems in that area. Then, go to testing for various anemias, etc. Then chronic infections. And so on. At each junction, make decisions based on science, not folk Medicine. That is for later. She can gain control over her own life only if she is willing to make the decisions.

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@micheledeville

Hi Kelsey, I am actually in search of answers on behalf of my daughter. I’m hoping to find help for her whether it is a good doctor to go to, ideas on treatment or diagnosis or just connecting her with other people that have similar symptoms. My daughter is 26 and started feeling sick last fall. She has had multiple doctors appointments, several tests run and there seems to be no answers. She is missing a ton of work, has no quality of life and is feeling very helpless and losing hope. There are no answers and no diagnosis. She has swollen lymph nodes, a constant sore throat and feeling like her throat is swollen, lack of appetite, exhaustion, fatigue and pain. I am wondering about chronic fatigue syndrome or fibromyalgia or something like that but not sure. I feel like she is giving up and I’m trying to help. I found this site and thought there may be good information here or at least recommendations of good providers that will search with her for answers. Thanks Kelsey.

Michele

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Hi Kristine –

Thanks so much for your response and kind words. I appreciate it and we will keep searching until we have answers. I agree with you and have thought allergy of some sort as well. I hope you are doing okay and have a wonderful Sunday.

Michele

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@oldkarl

Hi, Michele. I have great feeling for your daughter, as I have been through much of the same. I do not for a moment think she has the same stuff I do, but the search is much the same. My search for dx has lasted about 50 years. The trick for dx (diagnosis) is to find a series of tests which will steer you on to the right path, and on the road to the proper dx. I.E., I have been tested for, and then ruled out, fibromyalgia, lymphoma, chronic fatigue, and 20 or 30 other diseases of all kinds, from polio to malnutritions. Time after time, some doctor or nurse has said “Eureka!” Then later, they said, “Ooops, sorry…..” Finally, 18 months ago, as a sort of off-hand remark, a lab tech with almost no experience happened to say “Ever have your protein tested?” Well, that was the start, and in the intervening time I have my protein, kidneys, heart and everything else tested and retested, and I think I have at least part of the truth. Systemic, primary, amyloidosis of some sort. There is still more testing to do, but I feel good about the start. So my suggestion sounds easy. Ask everyone you see. Start with a basic test of some system(s) that is going bad. Mine were liver, kidney, pancreas, and cardiac. After each test, make lists of what is ruled out, what is ruled possible, and what should come next. Organize…Organize… her medical work. She must take control, and lead the doc around by the ring in the nose. Because I have many of the same symptoms, I would start with SERUM Free Light Chain Assay, 24-hour urine collection and test. If the sFLC returns negative for kappa and lambda proteins, and the urine does the same, that pretty much rules out any serious problems in that area. Then, go to testing for various anemias, etc. Then chronic infections. And so on. At each junction, make decisions based on science, not folk Medicine. That is for later. She can gain control over her own life only if she is willing to make the decisions.

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Thank you so much for your response. I agree with you. I know it is a long journey and one that takes diligence and persistence. I appreciate that you shared this with me and also your suggestions. Very helpful. I hope that you are getting answers and feeling better as well. Have a nice weekend and thank you again.

Michele

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@oldkarl

Hi, Michele. I have great feeling for your daughter, as I have been through much of the same. I do not for a moment think she has the same stuff I do, but the search is much the same. My search for dx has lasted about 50 years. The trick for dx (diagnosis) is to find a series of tests which will steer you on to the right path, and on the road to the proper dx. I.E., I have been tested for, and then ruled out, fibromyalgia, lymphoma, chronic fatigue, and 20 or 30 other diseases of all kinds, from polio to malnutritions. Time after time, some doctor or nurse has said “Eureka!” Then later, they said, “Ooops, sorry…..” Finally, 18 months ago, as a sort of off-hand remark, a lab tech with almost no experience happened to say “Ever have your protein tested?” Well, that was the start, and in the intervening time I have my protein, kidneys, heart and everything else tested and retested, and I think I have at least part of the truth. Systemic, primary, amyloidosis of some sort. There is still more testing to do, but I feel good about the start. So my suggestion sounds easy. Ask everyone you see. Start with a basic test of some system(s) that is going bad. Mine were liver, kidney, pancreas, and cardiac. After each test, make lists of what is ruled out, what is ruled possible, and what should come next. Organize…Organize… her medical work. She must take control, and lead the doc around by the ring in the nose. Because I have many of the same symptoms, I would start with SERUM Free Light Chain Assay, 24-hour urine collection and test. If the sFLC returns negative for kappa and lambda proteins, and the urine does the same, that pretty much rules out any serious problems in that area. Then, go to testing for various anemias, etc. Then chronic infections. And so on. At each junction, make decisions based on science, not folk Medicine. That is for later. She can gain control over her own life only if she is willing to make the decisions.

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Michele~
Has your daughter been tested for Hyper
Parathyroidism? What is her calcium level and parathyroid hormone level?

REPLY
@micheledeville

Hi Kelsey, I am actually in search of answers on behalf of my daughter. I’m hoping to find help for her whether it is a good doctor to go to, ideas on treatment or diagnosis or just connecting her with other people that have similar symptoms. My daughter is 26 and started feeling sick last fall. She has had multiple doctors appointments, several tests run and there seems to be no answers. She is missing a ton of work, has no quality of life and is feeling very helpless and losing hope. There are no answers and no diagnosis. She has swollen lymph nodes, a constant sore throat and feeling like her throat is swollen, lack of appetite, exhaustion, fatigue and pain. I am wondering about chronic fatigue syndrome or fibromyalgia or something like that but not sure. I feel like she is giving up and I’m trying to help. I found this site and thought there may be good information here or at least recommendations of good providers that will search with her for answers. Thanks Kelsey.

Michele

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Kristine~
I am also asking you the same question as Michele. Have you been tested to see about Hyperparathroidism since you have osteoporosis?

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@scottyrussell

Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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I am so glad you found something that works. I have used this type of therapy and it has helped for the moment but the pain comes back right away. I hope you continue to feel good and it inspires me to continue to look for treatments that may help.
Kristine

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Hi Nancy –

I will check on that – I know they checked her thyroid but not sure if it was specific to parathyroidism? Is that different? I will look back at some of her labs etc and check calcium and if there is anything in regards to parathyroid. I appreciate your response and question!! : )

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@mikween

HI everybody, I wanted to give everyone an update to my appt. at the Doctor the other day. He is a DPM. With I did not really kmow when I went there but I think he really knows what he is doing. Surgery for Neuropathy never even came up. Here is what he has started me on: L-Arginine 900 mg 3 times per day between meals, Magnesium 400mg 1 time per day. (He told me that you only need to take Magnesium if you are having a lot of pain with your neoropathy.) and Alpha Lipoic Acid 600 mg per day 3 times per day. And then he wrote me a prescription for sterioids mg. And then I am going to get about 7 blood work test. He wants to check my hormones. He also did a nerve block injection into one of my ankles to see if it would respond. It hurt like heeee..And it has not. So, he will probably put me on hormones. And then we will go from there.

He did mention something really quick about my foot drop that he could fix by doing an Ankle Joint Fusion. We only talked about it for a few minutes since I was mainly there for my neuropathy. He told me it would be just like not being able to wear my braces. My foot would stay in the same place all the time. I will talk to him more about that next time, because I had never heard of that. Has anyone of you ever heard of that or had it done?

I saw somone mention DMSO. I did hear that it could be good cream for your feet if you have neourpathy. I ordered some and will let you guys know what I think.

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HI @justinmMcClanahan, so I do have some questions. So you cannot move that ankle at all anymore right? I told my Pain Doctor about the surgery the foot doctor recommonded, and he told me in the long run I would be in more pain because my feet would be stuck in that upper position at all times. So, my foot doctor told me it would be like just not having to wear my braces. Which at that point sounded wonderful. But the more I think about it I do not know. I mean did not really talk that much to the foot doctor about it that day because I went to see him for my neurupathy. Anyway my Foot Doctor recommonded the Tendon Transfer. But, I think I have waited to late to have that done. I am going to get another EMG on the 25th and send it to this doc. I have been working with in NJ. The latest EMG he had was back from 2013. And I think he told me at that point he could have done something. But as the Foot Doctor told me the Tendons could break over time. Shit, pardon my language I do not know what tondo at this point. Oh yeah, in the meantime I ask the doctor in NJ if there was anything they could do for my neuropathy? And I get this e-mail from his assistant saying that she has GREAT NEWS they can fix my neuropathy an already has a surgery date set up for me asking me if that date would work? Not even telling me anything about the procedure. So. I told her why don’t we wait until we get the EMG back and see if he can do anything about my foot drop. Geez… I could not believe she already had everything all set up. This was before I found the foot doctor in San Antanio,TX. Anyway the downside of NJ, is that I live in TX. I wish your fusion would have been done on your feet, so you could tell me more about that. So, how is the ankle does hurt? And you cannot move it all? Correct? Sorry for the long e-mail. Perhaps we could exchange phone numbers. Thanks for all of your help.

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@scottyrussell

Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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@hopeful33250 I refer to them as episodes, perhaps others do not, but HE is when a high amount of ammonia gets to your brain and effects you. Initially with me it just caused some confusion and irrationalness. As time went on and my cirrhosis progressed it got worse to the point, as I mentioned, I was basically staring into space and non-responsive. That was when my husband called an ambulance to get me to the hospital because I was aware enough to be battling him. I was also aware enough to correct the grammar of the EMT! Since my HE was sporadic and isolated, not something that was a constant presence at all I think of them as episodes. With some people there is always an amount of HE. Thankfully with me when I was not having an episode I lived a normal life doing all the normal things, including going to my health club for exercise. After being in the hospital I was put on lactulose which forces the toxins out of your systems in your waste. That can be a problem in that the need to eliminate can come very quickly so it kept me in the house a lot. Then when I went to Boston that doctor put me on xifaxan which works in a different way and I was able to be totally normal for almost a year. Again, the progression of cirrhosis caught up with me and I had be on both the xifaxan and the dreaded lactulose. Lactulose is dreaded by pretty much all cirrhosis patients. As one person mentioned when you finally no longer have to take it you feel like doing a “happy dance”. 😉
JK

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@scottyrussell

Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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@pinkpain51 If this message is directed to me, thankfully I am no longer suffering at all, except for a few side-effects from the immunosuppressants. People keep telling me how well I look, and I am happy to hear that, plus I feel great.
JK

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@micheledeville

Hi Kelsey, I am actually in search of answers on behalf of my daughter. I’m hoping to find help for her whether it is a good doctor to go to, ideas on treatment or diagnosis or just connecting her with other people that have similar symptoms. My daughter is 26 and started feeling sick last fall. She has had multiple doctors appointments, several tests run and there seems to be no answers. She is missing a ton of work, has no quality of life and is feeling very helpless and losing hope. There are no answers and no diagnosis. She has swollen lymph nodes, a constant sore throat and feeling like her throat is swollen, lack of appetite, exhaustion, fatigue and pain. I am wondering about chronic fatigue syndrome or fibromyalgia or something like that but not sure. I feel like she is giving up and I’m trying to help. I found this site and thought there may be good information here or at least recommendations of good providers that will search with her for answers. Thanks Kelsey.

Michele

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@micheledeville Michelle, for some reason your name is not popping up in the names when I put it in but I believe I do have it spelled correctly,
I hope you and daughter get a diagnosis and help soon. I know too well what it is like to not get a diagnosis. I greatly regret not going to Boston from here (a suburb of Manchester, NH) for diagnosis when a number of months passed with no diagnosis. If you are not now going to a major medical facility I strongly advise it. I suffered for a year and four months with no diagnosis, and from what I know now it should not have been that tough, based on all of my symptoms.
JK

REPLY
@oldkarl

Hi, Michele. I have great feeling for your daughter, as I have been through much of the same. I do not for a moment think she has the same stuff I do, but the search is much the same. My search for dx has lasted about 50 years. The trick for dx (diagnosis) is to find a series of tests which will steer you on to the right path, and on the road to the proper dx. I.E., I have been tested for, and then ruled out, fibromyalgia, lymphoma, chronic fatigue, and 20 or 30 other diseases of all kinds, from polio to malnutritions. Time after time, some doctor or nurse has said “Eureka!” Then later, they said, “Ooops, sorry…..” Finally, 18 months ago, as a sort of off-hand remark, a lab tech with almost no experience happened to say “Ever have your protein tested?” Well, that was the start, and in the intervening time I have my protein, kidneys, heart and everything else tested and retested, and I think I have at least part of the truth. Systemic, primary, amyloidosis of some sort. There is still more testing to do, but I feel good about the start. So my suggestion sounds easy. Ask everyone you see. Start with a basic test of some system(s) that is going bad. Mine were liver, kidney, pancreas, and cardiac. After each test, make lists of what is ruled out, what is ruled possible, and what should come next. Organize…Organize… her medical work. She must take control, and lead the doc around by the ring in the nose. Because I have many of the same symptoms, I would start with SERUM Free Light Chain Assay, 24-hour urine collection and test. If the sFLC returns negative for kappa and lambda proteins, and the urine does the same, that pretty much rules out any serious problems in that area. Then, go to testing for various anemias, etc. Then chronic infections. And so on. At each junction, make decisions based on science, not folk Medicine. That is for later. She can gain control over her own life only if she is willing to make the decisions.

Jump to this post

@oldkarl Isn’t it odd how the strangest things can lead to a diagnosis? I was in the hospital for an HE episode and the HOSPITALIST ordered an ammonia test which led to my diagnosis. Why oh why did my PCP, an internist, not put that together? He knew the same symptoms as the hospitalist and more. Go figure.
JK

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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Hi @goodtime376,
We recently upgraded the website and some people are experiencing technical issues. If you are still having issues, please send me a private message by using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

Please describe the issue you are having or what error message you are getting. The more details, the better. We’ll get things straightened out for you. 🙂

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@oldkarl

Hi, Michele. I have great feeling for your daughter, as I have been through much of the same. I do not for a moment think she has the same stuff I do, but the search is much the same. My search for dx has lasted about 50 years. The trick for dx (diagnosis) is to find a series of tests which will steer you on to the right path, and on the road to the proper dx. I.E., I have been tested for, and then ruled out, fibromyalgia, lymphoma, chronic fatigue, and 20 or 30 other diseases of all kinds, from polio to malnutritions. Time after time, some doctor or nurse has said “Eureka!” Then later, they said, “Ooops, sorry…..” Finally, 18 months ago, as a sort of off-hand remark, a lab tech with almost no experience happened to say “Ever have your protein tested?” Well, that was the start, and in the intervening time I have my protein, kidneys, heart and everything else tested and retested, and I think I have at least part of the truth. Systemic, primary, amyloidosis of some sort. There is still more testing to do, but I feel good about the start. So my suggestion sounds easy. Ask everyone you see. Start with a basic test of some system(s) that is going bad. Mine were liver, kidney, pancreas, and cardiac. After each test, make lists of what is ruled out, what is ruled possible, and what should come next. Organize…Organize… her medical work. She must take control, and lead the doc around by the ring in the nose. Because I have many of the same symptoms, I would start with SERUM Free Light Chain Assay, 24-hour urine collection and test. If the sFLC returns negative for kappa and lambda proteins, and the urine does the same, that pretty much rules out any serious problems in that area. Then, go to testing for various anemias, etc. Then chronic infections. And so on. At each junction, make decisions based on science, not folk Medicine. That is for later. She can gain control over her own life only if she is willing to make the decisions.

Jump to this post

So true. I have learned the hard way to keep a paper trail set of my diagnosis papers, even with current medical e-records. My appendectomy was diagnosed after first being blown off as constipation. Then a few hours of diarrhea still did not cure the pain. I was close to breaking open. My cat became very attentive during cardiac episodes, even when there was no pain, only the EKG to show the problem. Oh, well.

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@micheledeville

Hi Nancy –

I will check on that – I know they checked her thyroid but not sure if it was specific to parathyroidism? Is that different? I will look back at some of her labs etc and check calcium and if there is anything in regards to parathyroid. I appreciate your response and question!! : )

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Michelle ~ Thyroid and parathyroid are very different. The parathyroids are usually located on the thyroid but purposes are entirely different. Google parathyroid.com for info. Very briefly if her calcium is elevated and PTH (parathyroid hormone) level is elevated that may mean a bad parathyroid gland is causing symptoms. Surgery is the cure.

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