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.

@horthog

I have all the symptoms of ACNES , basically neuropathic pain, as you indicated. Upon movement etc it can be a 10. The pain has not gone away, I have had it for a month but I cannot get a DR to see or examine me so I have to try and tell them over the phone what i think it might be and what medication they should prescribe. Nothing really relieves it ad they will not prescribe any strong analgesia. Can I ask, are people led to believe that we have a great health care system in the UK? because if so then you are truly being lied to, it is horrendous and they do not care whether you live or die.

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Hi @horthog, I'm indeed sorry that you are not getting the care you seek. You may wish to consider seeking health services from Mayo Clinic in London UK. Located in London, Mayo Clinic Healthcare offers an array of services, including a range of comprehensive health assessments, specialist consultations, concierge medical programmes and second opinion services. We offer expert care to our patients in London and also provide a gateway to a variety of highly skilled specialists and services in the United States. See more here: https://www.mayoclinichealthcare.co.uk/

You may also wish to talk with other members who have ACNES here:
– ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome https://connect.mayoclinic.org/discussion/acnes-abdominal-cutaneous-nerve-entrapment-syndrome/

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@horthog

I have all the symptoms of ACNES , basically neuropathic pain, as you indicated. Upon movement etc it can be a 10. The pain has not gone away, I have had it for a month but I cannot get a DR to see or examine me so I have to try and tell them over the phone what i think it might be and what medication they should prescribe. Nothing really relieves it ad they will not prescribe any strong analgesia. Can I ask, are people led to believe that we have a great health care system in the UK? because if so then you are truly being lied to, it is horrendous and they do not care whether you live or die.

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@horthog
My heart goes out to you for the awful predicament you are in. To be in so much pain and not be able to get any professional help? Sounds bleak.

Yes, most people here don't have much knowledge about things outside the US. I also think our news media blocks info they don't want us to hear and they downplay how bad socialized medicine is elsewhere (it's taboo to discuss political views in our country so that is all I will say about that).

I just found a really detailed webpage on ACNES that you might have seen but if not it has amazing drawings of the muscles in the front torso and abdomen as well as all the nerve networks in the abdomen. It also mentions some of the tests that may be proffered to you that are a waste of time. If you want to read it, it's here: https://www.aafp.org/afp/2018/1001/p429.html
An interesting quote from this page says:
"Because of physicians' unfamiliarity with abdominal wall pain and concern about the consequences of missing serious pathology, evaluation is often misdirected toward costly and unnecessary laboratory tests, advanced imaging studies, consultations, and frequent clinic visits. Patients may be exposed to unwarranted invasive procedures such as endoscopy, laparoscopy, or cholecystectomy."

So maybe not being seen by an MD there is a blessing in a way. In the situation you are in you are doing the best thing you can do, which is your own research. BTW, in the UK do you guys have legalized marijuana for pain there? That could be helpful for you as you wait to talk to pain docs there. Try Mayo in London as Colleen suggests. I didn't know they had an outpost there. Mayo is the best place there is and if you can be seen there, your golden.

My heart just cries for the insufferable treatment you are getting there. Please know I sympathise.

Hank

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@horthog

Thank you for your message and kind thoughts, Read my previous post and reply about socialised care in the uK, it is horrific.

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Yes, it's just wrong!! My heart goes out to you and your fellow countrymen and the same for suffering patients in other countries going through the same thing. I wish I could change it!!! Sunnyflower

Liked by Hank

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@horthog

I am not experiencing any side effects from Gabapentin but am concerned about increasing in strength as it is excreted via the Kidney's. I only have one Kidney now as I had a Tumour, I had to have a left Nephroureterectomy last year for a TCC. I suffered for six months in pain and passing dark red blood in my urine, known as Haematuria. I am now heading towards 300mgs times a day. We do not have a very good health care service in the UK despite what you might hear.

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You do have multiple health problems, @horthog. Your history of TCC and being left with one kidney would increase your concern about the meds you are taking. Please see Colleen's (@colleenyoung) post about Mayo in London.

Is it possible for you to look into that?

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@lucy6lucy

Hi my name is Didi and I live in chronic pain I have fibromyalgia and the pain is so horrible I'm going to kinds of pain medication and it helps a little but I'm also isolated hurt no friends really just try to make the best of my day but everyday is a pain day 24/7 does anybody else have this condition fibromyalgia and live in constant pain like I do and what do you do to live with it

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@lucy6lucy Welcome to Mayo Clinic Connect. It sounds incredibly difficult to have chronic pain, fibromyalgia, and isolation. I'm wondering if you are involved with a social worker, mental health professional, or disability case manager?

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Hi to all! My name is Susan and I have multiple autoimmune diseases in addition to chronic back pain due to multiple fractures from osteoporosis. I have been paralyzed by CIDP twice in the last seven years and both times rehabbed to be able to walk.. I now use a walker. I have a nerve stimulator implanted which doesn't seem to help at all. I control my pain with opioids (which I despise). I am looking for information on pain pumps. I feel like that is my last option.

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@txamo

Hi to all! My name is Susan and I have multiple autoimmune diseases in addition to chronic back pain due to multiple fractures from osteoporosis. I have been paralyzed by CIDP twice in the last seven years and both times rehabbed to be able to walk.. I now use a walker. I have a nerve stimulator implanted which doesn't seem to help at all. I control my pain with opioids (which I despise). I am looking for information on pain pumps. I feel like that is my last option.

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@txamo It sounds like you have been through a lot of medical issues, and probably, like so many of us feel, just one would be enough!

Within this discussion group on chronic pain, if you go back to the index of conversation, please scroll down to one that is titled "I have a pain pump…" Right now I am on my tablet and cannot paste the address in here for you to go right there.

May I ask what opioid you are on, and for how long? Has your pain management team been able to assist you on a pain pump, and how to titrate off your current pain meds?
Ginger

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@gingerw

@txamo It sounds like you have been through a lot of medical issues, and probably, like so many of us feel, just one would be enough!

Within this discussion group on chronic pain, if you go back to the index of conversation, please scroll down to one that is titled "I have a pain pump…" Right now I am on my tablet and cannot paste the address in here for you to go right there.

May I ask what opioid you are on, and for how long? Has your pain management team been able to assist you on a pain pump, and how to titrate off your current pain meds?
Ginger

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@txamo Below is the discussion link @gingerw mentioned.

– Pain pump, I have one, how about one for you? https://connect.mayoclinic.org/discussion/pain-pump-i-have-one-how-about-one-for-you/

Like Ginger, I too am curious what your pain management team has done to inform you about pain pumps?

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@txamo

Hi to all! My name is Susan and I have multiple autoimmune diseases in addition to chronic back pain due to multiple fractures from osteoporosis. I have been paralyzed by CIDP twice in the last seven years and both times rehabbed to be able to walk.. I now use a walker. I have a nerve stimulator implanted which doesn't seem to help at all. I control my pain with opioids (which I despise). I am looking for information on pain pumps. I feel like that is my last option.

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@txsmo
Hi Susan, back on 9/28 you mentioned that you were only being treated with gabapentin, but here you say you are taking opioids. I am confused as gabapentin is not an opioid.

I remember you talking about your pain before when we chatted and I can't believe how much hell you are going through with all of this. I know you said you were on bisphosphonates for your osteoporosis. Does that add to your other pain or do you tolerate it okay? I'm sorry your stimulator is not helping you. It seems I am hearing more and more people say that about their stimulators. My wife has pretty much decided not to get one at this point, having heard so many failure stories.

I hope you can find someone good to help you with getting a pain pump put in. Sound like a much better way to get your pain dealt with in a much more methodical manner. I wonder if you ever found out what you wanted to know about ketamine? Your whole story really saddens me. You said you were diagnosed with CIDP 6 years ago. I wonder whether it come on you all at once or was it was gradual. I know when I found out I had MS it was about as sudden as it could have been, literally hit me all at once on the 4th of July one year. Best to you, Hank

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@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, My name is Woogie. I am an old lady now but haven't always been. When I was in high school, my eyes started itching, hurting, they felt exactly like they had sandpaper in them. My mother took me to the doctor and we found out I had conjunctivitis. I got a prescription for it and thank God, that cleared it up. Have you been to the doctor? Now, I have severely dry eyes and rub them constantly. My doctor said to use otc eye drops. He said you can do it frequently during the day. I forget to do it and now my neck hurts so bad I am in pain from multiple places. I have fibromyalgia which I was diagnosed with in 1980. I have severe spinal stenosis which causes immense pain in back and legs. I take pain pills from the pain clinic but they are not enough. In fact, he recently took one away from me because I asked him for muscle relaxor. Two weeks ago, I took a flying trip and hit the top of my head so hard, I was knocked almost unconscious. I had a cat scan and learned my neck C4 continous has been fractured. I have an appointment next week with a surgeon and pray to God that I do not have to have surgery. I also have a huge bulge in my esophagus and need surgery on hernia. I am praying for better health for everyone and that we all believe.

Liked by migizii, lorirenee1, Hank

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@jesfactsmon

@txsmo
Hi Susan, back on 9/28 you mentioned that you were only being treated with gabapentin, but here you say you are taking opioids. I am confused as gabapentin is not an opioid.

I remember you talking about your pain before when we chatted and I can't believe how much hell you are going through with all of this. I know you said you were on bisphosphonates for your osteoporosis. Does that add to your other pain or do you tolerate it okay? I'm sorry your stimulator is not helping you. It seems I am hearing more and more people say that about their stimulators. My wife has pretty much decided not to get one at this point, having heard so many failure stories.

I hope you can find someone good to help you with getting a pain pump put in. Sound like a much better way to get your pain dealt with in a much more methodical manner. I wonder if you ever found out what you wanted to know about ketamine? Your whole story really saddens me. You said you were diagnosed with CIDP 6 years ago. I wonder whether it come on you all at once or was it was gradual. I know when I found out I had MS it was about as sudden as it could have been, literally hit me all at once on the 4th of July one year. Best to you, Hank

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Hi Hank, I am still taking gabapentin for neuropathy that is a residual of the CIDP. I know gabapentin is not an opiod. I take opiods three times a day. The pain relief only seem to last 2 to 3 hours. I am probably going to have C-4,5,6 fusion. When I see the orthopedic surgeon in a few weeks I am going to ask him about a pain pump. Another member of this group wrote me yesterday and told me about her pump and I was pleased to hear about it. I am at the point where I should be enjoying life but I dread getting out of bed every day.

Liked by Hank

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@gingerw

@txamo It sounds like you have been through a lot of medical issues, and probably, like so many of us feel, just one would be enough!

Within this discussion group on chronic pain, if you go back to the index of conversation, please scroll down to one that is titled "I have a pain pump…" Right now I am on my tablet and cannot paste the address in here for you to go right there.

May I ask what opioid you are on, and for how long? Has your pain management team been able to assist you on a pain pump, and how to titrate off your current pain meds?
Ginger

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I do not see the index you refer to.

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@txamo

I do not see the index you refer to.

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@txsmo
Hi Susan, I think Ginger means here:
https://connect.mayoclinic.org/group/pain/?pg=4
This is the index of all of the chronic pain discussions. The one she refers to is way down the list. Best, Hank

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@txamo

I do not see the index you refer to.

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@txsmo Here is the discussion I was referring to last night, when I was on my tablet. @erikas was nice enough to link it in her response earlier.
https://connect.mayoclinic.org/discussion/pain-pump-i-have-one-how-about-one-for-you/
And here is a link to the discussions index within the "Chronic Pain" group https://connect.mayoclinic.org/group/pain/
Ginger

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@jesfactsmon

@txsmo
Hi Susan, back on 9/28 you mentioned that you were only being treated with gabapentin, but here you say you are taking opioids. I am confused as gabapentin is not an opioid.

I remember you talking about your pain before when we chatted and I can't believe how much hell you are going through with all of this. I know you said you were on bisphosphonates for your osteoporosis. Does that add to your other pain or do you tolerate it okay? I'm sorry your stimulator is not helping you. It seems I am hearing more and more people say that about their stimulators. My wife has pretty much decided not to get one at this point, having heard so many failure stories.

I hope you can find someone good to help you with getting a pain pump put in. Sound like a much better way to get your pain dealt with in a much more methodical manner. I wonder if you ever found out what you wanted to know about ketamine? Your whole story really saddens me. You said you were diagnosed with CIDP 6 years ago. I wonder whether it come on you all at once or was it was gradual. I know when I found out I had MS it was about as sudden as it could have been, literally hit me all at once on the 4th of July one year. Best to you, Hank

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Hand, I get an infusion of Reclast once a year. I've had four infusions so far and skipped last year as you cannot get them forever since there is a risk of jaw or hip fracture. It strengthened my bones but does not correct the damage already there. I could not find out any information about ketamine infusions for pain. I live in a suburb of Dallas/Ft. Worth so if it could get done I am sure I could have found out someone who was doing it for pain. It took me four hospital admissions over 13 months to be diagnosed with CIDP. It is a vwry rare disease. I'm sorry about your MS. I hope you have found neurologist with a good treatment plan. Regards, Susan

Liked by lorirenee1, Hank

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