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.

@janetdh
This is @kathyvienna. It was interesting reading your postings about your CRPS. I developed CRPS in 2008 after I had back surgery. It started in my right foot and has gone up my rt. leg. I haven’t found anything except oxycontin, cymbalta, lyrics, alive. My pain dr. has discussed the possibility of putting in a pain pump with fentanyl. Have you ever heard of that. There doesn’t appear to be much out there. So discouraging.
Kathy

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Hi my name is Jen,
My primary problem right now is fibromyalgia, although I have many broken bones from accidents that required multiple surgeries. Those I’ve been have left me in severe chronic pain, and I’ve been told started the fibromyalgia. Just from a bad break of my humorous, I had five surgeries. But all of the trauma has now caused the fibromyalgia and all the symptoms that go along with it. The worst of it being daily severe headaches and pain between my ribs that feel like I have a knife stuck there, I’ve been told it’s one particular trigger point bothering me there and at the base of my head is another one..
I still have a hard time believing I have something called fibromyalgia, that causes so much pain, has taken away so much of my life, and it just feels like there is very little relief from it. I get offers for work actually quite a lot, and I can’t accept. I’ve tried four times to go back to work. The initial shoulder break that started this snowball rolling downhill, makes work too painful. I cannot do my work because the pain in my neck and shoulder are so bad I cannot sit at a computer.

I used to be a skier. horseback rider, loved water sports, dancing, ballet, tennis and many other things. Now I crochet, watch TV, read and if I’m lucky I go out with my friends for lunch, I have a few awesome friends who bring lunch to my house for me.

I would love to find a Clinic that had a team of doctors that could look me over top to bottom, make sure that this is fibromyalgia and maybe possibly something with it additional. I’d like them to see if there were other reasons for what’s going on because my doctors here seem bewildered. They can treat the symptoms a little bit, with some terrible flareups I don’t know what to do. I love a place that could give me some answers. I’ve even been to one of our large medical centers out in Los Angeles, but they didn’t treat you in rheumatology unless you had very specific symptoms. They then outsourced me to another rheumatologist that didn’t really seem anything different than the rest. I may not sound like it here, but I’m usually a very upbeat happy person. I think I’m just very frustrated because I feel like I’ve had my lifestyle stolen within that time frame of two years. I think some of the symptoms were coming on before that,mostly the headaches, but I didn’t know what they were.

I live in California, I’ve lived in many different parts of it, there’s one area I’d love to move back to where my son and daughter-in-law live but I’m too sick to make the move, maybe someday.

I can tell you, I relate to all the things I’ve heard from everyone here. It’s really good to hear that I am not the only one but I hate seeing you suffer like I feel like I do. I was a caregiver, and the worst part is now I have to be taken care of. I’ve been told that that’s a gift to allow others to help you if I let it be, I’m working on that.
Anyway, it’s nice to meet you all, Jen

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@kathyv

@janetdh
This is @kathyvienna. It was interesting reading your postings about your CRPS. I developed CRPS in 2008 after I had back surgery. It started in my right foot and has gone up my rt. leg. I haven’t found anything except oxycontin, cymbalta, lyrics, alive. My pain dr. has discussed the possibility of putting in a pain pump with fentanyl. Have you ever heard of that. There doesn’t appear to be much out there. So discouraging.
Kathy

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Oxycodone is the only thing that takes the pain away from my right ankle. Unfortunately, I would agree. The medical community has limited options in terms of treatment as well as understanding how CRPS progresses as it is unique to each individual. Very frustrating and depressing knowing it is affecting more areas of my body and not knowing what will happen next. A friend of mine found a site that has some good info–The Princess in the Tower. Think it is out of England. To help make some kind of meaning out of what has happened to me I try to advocate on the challenges of having chronic pain and CRPS. All the best to you on your own journey!

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@jenapower

Hi my name is Jen,
My primary problem right now is fibromyalgia, although I have many broken bones from accidents that required multiple surgeries. Those I’ve been have left me in severe chronic pain, and I’ve been told started the fibromyalgia. Just from a bad break of my humorous, I had five surgeries. But all of the trauma has now caused the fibromyalgia and all the symptoms that go along with it. The worst of it being daily severe headaches and pain between my ribs that feel like I have a knife stuck there, I’ve been told it’s one particular trigger point bothering me there and at the base of my head is another one..
I still have a hard time believing I have something called fibromyalgia, that causes so much pain, has taken away so much of my life, and it just feels like there is very little relief from it. I get offers for work actually quite a lot, and I can’t accept. I’ve tried four times to go back to work. The initial shoulder break that started this snowball rolling downhill, makes work too painful. I cannot do my work because the pain in my neck and shoulder are so bad I cannot sit at a computer.

I used to be a skier. horseback rider, loved water sports, dancing, ballet, tennis and many other things. Now I crochet, watch TV, read and if I’m lucky I go out with my friends for lunch, I have a few awesome friends who bring lunch to my house for me.

I would love to find a Clinic that had a team of doctors that could look me over top to bottom, make sure that this is fibromyalgia and maybe possibly something with it additional. I’d like them to see if there were other reasons for what’s going on because my doctors here seem bewildered. They can treat the symptoms a little bit, with some terrible flareups I don’t know what to do. I love a place that could give me some answers. I’ve even been to one of our large medical centers out in Los Angeles, but they didn’t treat you in rheumatology unless you had very specific symptoms. They then outsourced me to another rheumatologist that didn’t really seem anything different than the rest. I may not sound like it here, but I’m usually a very upbeat happy person. I think I’m just very frustrated because I feel like I’ve had my lifestyle stolen within that time frame of two years. I think some of the symptoms were coming on before that,mostly the headaches, but I didn’t know what they were.

I live in California, I’ve lived in many different parts of it, there’s one area I’d love to move back to where my son and daughter-in-law live but I’m too sick to make the move, maybe someday.

I can tell you, I relate to all the things I’ve heard from everyone here. It’s really good to hear that I am not the only one but I hate seeing you suffer like I feel like I do. I was a caregiver, and the worst part is now I have to be taken care of. I’ve been told that that’s a gift to allow others to help you if I let it be, I’m working on that.
Anyway, it’s nice to meet you all, Jen

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Jen, the Bible says that it’s more blessed to give than to receive, and it took me a long time to understand that I was robbing others of a blessing when I didn’t want to take what was offered. It’s hard to be a receiver after a lifetime of being a giver. Of course, we can abuse that and turn to feeling entitled. Not likely to happen to true, unselfish givers.

Jim

Liked by blindeyepug

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@jimhd

I have trouble with dysphagia, and wonder if there’s a discussion group going where I can learn more than the little the doctor has told me.

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I’ve been diagnosed with Achalasia (throat) and keep hoping to hear from others. I personally must swallow with my head extreme left to have food reach my stomach (best way). I must concentrate every time I eat or drink to do this. Not easy if there is ANY distraction.
I’ve lost a lot of weight and now weigh daily to try to keep it level. Anyone with this problem??? Nanc

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@jimhd

I have trouble with dysphagia, and wonder if there’s a discussion group going where I can learn more than the little the doctor has told me.

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Manx, our neighbor had a similar problem and I am so sorry you are having this problem. One thing that helped him is to have a restaurant puréed. Not sure if this might help but some restaurants will do this. J.

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@jimhd

I have trouble with dysphagia, and wonder if there’s a discussion group going where I can learn more than the little the doctor has told me.

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Hello @bilobabe, welcome to Connect. Thank you for sharing a bit about yourself. I think you may be interested in checking out this conversation taking place in the Digestive Health group, Achalasia – http://mayocl.in/2mj2Qmy. In this discussion you will find other members discussion symptoms similar to yours.

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@kathyv

@janetdh
This is @kathyvienna. It was interesting reading your postings about your CRPS. I developed CRPS in 2008 after I had back surgery. It started in my right foot and has gone up my rt. leg. I haven’t found anything except oxycontin, cymbalta, lyrics, alive. My pain dr. has discussed the possibility of putting in a pain pump with fentanyl. Have you ever heard of that. There doesn’t appear to be much out there. So discouraging.
Kathy

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Hello @kathyv. If you would like, you may want to join @janetdh and other members discussing CRPS here, After knee replacement I developed severe RSD, http://mayocl.in/2cX10nN.

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@jenapower

Hi my name is Jen,
My primary problem right now is fibromyalgia, although I have many broken bones from accidents that required multiple surgeries. Those I’ve been have left me in severe chronic pain, and I’ve been told started the fibromyalgia. Just from a bad break of my humorous, I had five surgeries. But all of the trauma has now caused the fibromyalgia and all the symptoms that go along with it. The worst of it being daily severe headaches and pain between my ribs that feel like I have a knife stuck there, I’ve been told it’s one particular trigger point bothering me there and at the base of my head is another one..
I still have a hard time believing I have something called fibromyalgia, that causes so much pain, has taken away so much of my life, and it just feels like there is very little relief from it. I get offers for work actually quite a lot, and I can’t accept. I’ve tried four times to go back to work. The initial shoulder break that started this snowball rolling downhill, makes work too painful. I cannot do my work because the pain in my neck and shoulder are so bad I cannot sit at a computer.

I used to be a skier. horseback rider, loved water sports, dancing, ballet, tennis and many other things. Now I crochet, watch TV, read and if I’m lucky I go out with my friends for lunch, I have a few awesome friends who bring lunch to my house for me.

I would love to find a Clinic that had a team of doctors that could look me over top to bottom, make sure that this is fibromyalgia and maybe possibly something with it additional. I’d like them to see if there were other reasons for what’s going on because my doctors here seem bewildered. They can treat the symptoms a little bit, with some terrible flareups I don’t know what to do. I love a place that could give me some answers. I’ve even been to one of our large medical centers out in Los Angeles, but they didn’t treat you in rheumatology unless you had very specific symptoms. They then outsourced me to another rheumatologist that didn’t really seem anything different than the rest. I may not sound like it here, but I’m usually a very upbeat happy person. I think I’m just very frustrated because I feel like I’ve had my lifestyle stolen within that time frame of two years. I think some of the symptoms were coming on before that,mostly the headaches, but I didn’t know what they were.

I live in California, I’ve lived in many different parts of it, there’s one area I’d love to move back to where my son and daughter-in-law live but I’m too sick to make the move, maybe someday.

I can tell you, I relate to all the things I’ve heard from everyone here. It’s really good to hear that I am not the only one but I hate seeing you suffer like I feel like I do. I was a caregiver, and the worst part is now I have to be taken care of. I’ve been told that that’s a gift to allow others to help you if I let it be, I’m working on that.
Anyway, it’s nice to meet you all, Jen

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@jenapower, I would like to add a little bit of information to what I provided you in the Fibromyalgia Pain discussion.

Here is another discussion that talks specifically about fibromyalgia treatment at Mayo Clinic. Mayo Clinic’s Fibromyalgia Clinic, http://mayocl.in/2mm9LvQ.

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I am new to this site. I have chronic pain from MS.I don’t know any other person with MS.

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@tashanharrell

I am new to this site. I have chronic pain from MS.I don’t know any other person with MS.

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Hello ,my name is Dori Ober and I want to join the Mayo Clinic on conversation site. I believe I signed up a few months ago but I would prefer  to use Gmail as my email address . I’m signing on today as a brand new account. I created a password and also a user handle name and I think I got those confused. so can you please help me get on so that I am an active participant using the right sign on every time. . I’m in alot of pain and in need of your help and I want to learn things.
respectfully Dori

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@tashanharrell

I am new to this site. I have chronic pain from MS.I don’t know any other person with MS.

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Welcome, Tasha. I’m just assuming that name from your sign in. My sister has MS, and I have a lot of the symptoms. I’m supposed to be getting an appointment with a neurologist for an assessment soon. I know that it can be a difficult illness to deal with. I know you’ll find support here at Mayo Connect.

Jim

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@tashanharrell

I am new to this site. I have chronic pain from MS.I don’t know any other person with MS.

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Yes its Tasha. Yes very hard . I hope so I just really need people to talk to who are going through it. Because hard to talk to people who can’t understand

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@tashanharrell

I am new to this site. I have chronic pain from MS.I don’t know any other person with MS.

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Hi Dori (@virtuous),
To change the email associated with your account, please do the following:

1. Go to your account settings here: https://connect.mayoclinic.org/account/
2. Change you email address in the section called “Login Information”
3. Scroll to the bottom of the page and click “Save Profile”

Now notifications will be sent to your gmail account.
Please note that I deleted your full name and gmail address from this public discussion to protect your privacy. We don’t want you to get unwanted spam. 🙂
If you have further questions about your account, please send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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@tashanharrell

I am new to this site. I have chronic pain from MS.I don’t know any other person with MS.

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Hello @tashanharrell, I would like to add my welcome to @jimhd‘s.

If you would like to meet others with MS, I might suggest that you check out the following discussion: Multiple Sclerosis (MS) – please introduce yourself, http://mayocl.in/2eKI4Kj.

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