Chronic Pain members - Welcome, please introduce yourself

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

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/

@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

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

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?

@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?

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.

@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

@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?

@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