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Ouch sounds like nerve pain

@horthog Since your appointment where the medications were prescribed, it sounds like you have communicated with your provider about the extreme pain you are experiencing. You have also attempted to contact your surgeon and went to the ER (ED). You have not received a response from the surgeon and the ER (ED) does not know what the issue is and how to treat it. Is that correct?

I'm not sure if you have such a thing in the UK but here is US we sometimes have coordinators, social workers, and advocates that work with patients in hospitals. They facilitate communication between providers. It sounds like no one is taking responsibility in finding a cause for your pain.

I find it curious that the surgeon will not return your calls. At Mayo Clinic we have the office of Patient Experience and that's another resource I'd suggest you utilize, if you were in America.

Are there social workers, coordinators, and/or an office of patient experience in the UK and at your hospital system?

Hello, thank you for your reply and comments. We have nothing like this in the Uk, sadly this is just the way it is here. I am constantly on the Telephone and emailing and begging for help. It is awful as I feel that I have become the Dr and I actually want to be the patient. I was screaming and crying with the pain this afternoon. I have left a message, email etc with the secretary of a Pain Management Consultant. I hope to speak to his secretary tomorrow but I may not be able to see him for another 2 weeks. I cannot refer myself. I have to have a GP referal. I waited two weeks for a phone call appointment, You have to try and get an appointment on the day, start ringing at 8.30 a.m phone engaged, by the time it is answered all the appointments have gone and you have to try again. There are no longer face to face appointments, they are not seeing patients, they are all working from home. The NHS in the UK is not to be envied, believe me. I am worn out by trying to fight the system and think what my next move should be, feeling so ill and having to work out the next tactic. It is especially hard as I am a retired Registered Nurse. I will keep you posted.

Dear horthog, wow, you have really been through it! It makes my heart feel heavy just reading about your journey.

It sounds like you are doing the right thing by advocating for yourself. I have learned over the years that patients absolutely must do that and be very persistent and very patient.

I will be upholding you in prayer that you find doctors that are willing to go the extra mile to get you diagnosed and that it happens very quickly. I will also be praying that you experience relief from your pain.

Many blessings, Sunny flower @jesfactsmon

@horthog
I have heard that socialized medicine in places like UK and Canada was not that good. Sorry that you (and so many others) find yourself in this situation.

In my previous post I asked WAY too many questions. Sorry, but I did want to understand better the details of what you are experiencing. Can you describe it a little more fully?

Also, why did you said "I might have Acute Cutaneous Nerve Entrapment"? Did you come up with that from your online research?

If you can give a more complete description perhaps someone might be able to give you some ideas. No guarantees but nothing to lose in any case. Best, Hank

Dear horthog, I am so sorry to hear what you are going through ; both your pain and trying to get help for it.

I can think of a few possible options but do not understand your Healthcare System so I may be off.

One would be the possibility of asking if you can get something to help your intolerable pain until you can be seen, and or present at an emergency room with essentially the same goal, getting something to help you tolerate your pain until you can be seen by your or another doctor outside of the hospital.

If the emergency room is an option for you that you would like to take advantage of, and the doctor there is willing to give you a few weeks prescription for pain meds, you could also ask for that doctor to send a notice to your doctor or a doctor of your choice asking them two get you in sooner.

Here, we are doing a lot of virtual face-to-face appointments. I have done many myself. That would be another option you could request from the provider of your choice that is if you have one. If you do not you have one yet, you will need to start to start somewhere and I would suggest reading the biographies of doctors that are an option for you and will be covered by your insurance.

I apologize that I have not had time to read most of your post and understand your story correctly but I hope one of these possible options could work for you.

In the meantime I will continue to uphold you in prayer that the best thing works out for you very, very quickly! And that you will experience relief at minimum to the point that your pain is tolerable.

I know you must have some anxiety about all of this and I just wanted to tell you what works for me.

Please keep in mind that I hold no judgement for anyone whose faith is different than my own.

The only and sole thing that works for me is my intimate relationship with our living God of the Bible. I know Him well enough to trust Him in my circumstances and also understand that this life on Earth is very temporary compared to all of eternity and that someday, as the bible promises, I will receive a new body in heaven and there will not be any more tears or pain.

We all walk through many fires here on Earth. I will also be praying for you, that you will experience the comfort, presence, hope, and peace of God through Christ that surpasses all understanding, Philippians 4:7.
In Christ unfathomable love, Sunnyflower

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

Oh yes. I have had fibro for over 30 years. The pain never lessens and it seems to get worse the older I get. I have tried everything. So far I have not found any medication or treatment that has been effective. It is very difficult to cope, especially now with covid 19.

@lucy6lucy
Hi Lucy, I am my wife's sometimes caregiver.(meaning sometimes she needs care and sometimes not so much). One of her problems has been fibro since about 1990 or 91. One thing she has always done for her fibro pain is take hot baths in with epsom salts. That really helps to relieve her pain quite a bit. She uses Dr. Teals epsom salts usually. There is one for soothing I know she likes (there are a lot of kinds). She has a hard time getting much exercise without it causing her whole body to be wracked with pain for a day or two. It's not fun, but I think it's not her biggest problem. That would be neuropathy pain in her feet. Sorry you feel isolated from people. Do you have any hobbies or activities you can do that bring you in touch with others? Best, Hank

Hi amandrajro, I got a message from my GI Dr at UTSW telling me to go to the Mayo Clinic website and ask for an appointment. They didn’t tell me anything else like, which one or any helpful information. I’ve been reading that the one in Minneapolis might be the best one for GI issues. Do you have any recommendations? I’m totally lost now. Heck, I can barely get to the grocery and back.