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 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

Liked by Hank

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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.

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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
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

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@amandajro

Hello @dvdhoover. I have to commend you on your continued search for answers despite the amount of pain you are in on a daily basis. When is your appointment and what Mayo Clinic location are you visiting?

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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.

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Hi, @dvdhoover. Please use the contact information on this form to request an appointment at Mayo Clinic http://mayocl.in/1mtmR63. They will review your medical records and history, and discuss with you treatment options.

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@horthog

I am unabe to move much as the pain is so much worse upon movement, positional. Only relieved by lying down. I can just about wash, and feed myself. I am not able to even go out, the pain is like having been burnt and the feeling of glass under my skin.

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Hello @horthog

I just noticed this discussion and your description of your pain as, "like having been burnt and the feeling of glass under my skin." That does sound very much like nerve pain. I recently recovered from Shingles and I described my pain in a similar way.

You said you are taking Gabapentin and it affects the quality of your life. I understand that. Gabapentin is quite effective for nerve pain but it can make you feel foggy and out of balance at times. Is that the same problem you are having? You also mentioned that you are taking Paracetamol. I'm not familiar with that med. Has a steroid ever been tried?

I can imagine how frustrated you must be. As an R.N. (medical professional) you know enough to know that you need more treatment. It must be difficult not to be able to communicate that with a doctor.

How much Gabapentin are you currently taking?

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@hopeful33250 Paracetamol is the brand name for Acetaminophen. I've heard multiple people state that Gabapentin causes fogginess and balance issues. This is hard for me to know since I, too, have a long history of Fibromyalgia, which causes both of those symptoms. I currently take 300 mg. of Gabapentin spread through-out the day. I'm on Celebrix but I don't think it's doing much for me. My foot neuralgia is a big problem along with back and neck pain that's off the chart at times. I sleep in a recliner primarily with heating pads and move to our firm leather couch sometimes. I walk a lot to keep moving and stretch as much as possible. I have Ehlers Danlos Syndrome along with a host of many other auto-immune diseases including IBS. I'm trying to get back in for another EGD plus new orthopedic opinions on my back and neck at UTSW. I'm not letting the grass grow under my feet meanwhile. Life still provides good moments to be grasped and used. 🙂

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@hopeful33250

Hello @horthog

I just noticed this discussion and your description of your pain as, "like having been burnt and the feeling of glass under my skin." That does sound very much like nerve pain. I recently recovered from Shingles and I described my pain in a similar way.

You said you are taking Gabapentin and it affects the quality of your life. I understand that. Gabapentin is quite effective for nerve pain but it can make you feel foggy and out of balance at times. Is that the same problem you are having? You also mentioned that you are taking Paracetamol. I'm not familiar with that med. Has a steroid ever been tried?

I can imagine how frustrated you must be. As an R.N. (medical professional) you know enough to know that you need more treatment. It must be difficult not to be able to communicate that with a doctor.

How much Gabapentin are you currently taking?

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Hello Teresa and @hopeful33250, I believe that paracetamol is acetaminophen.

Yes, I agree with you Teresa that, these symptoms are pretty typical neuropathy symptoms.

I to take gabapentin and experience the same side effects you described Teresa. It has knocked me off my balance, fogged up my brain, compromise my memory and sub other cognitive abilities as well as making some bad judgment calls.

However, it helps me tolerate my pain. I keep trying to titrate up and down between 600 and 800 mg a day, dividing them into 3 times a day because this drug has a short half-life and that really is the most therapeutic way to take it. I might take 200mg. in the morning 300mg. in the afternoon and 100-200mg. at night, something like that but every time I go down on it, which can be done if you do it a hundred mg at a time for say like 2 to 3 days, of course with permission from your doctor, my pain becomes too much and interferes too much in my life.

I hope and pray all the best for both of you, warmest wishes, Sunny flower

Liked by Hank

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@sunnyflower

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

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Thank you, it is a nightmare in the UK.

Liked by sunnyflower

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@erikas

@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?

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We are not set up the same as you are in the USA. Such a different system .

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@horthog

Thank you, it is a nightmare in the UK.

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I am so very sorry!! The liberals in our country are trying to install socialized medicine. I can't understand it. It is especially important for chronic pain patients who can't wait so long for care. My heart goes out big time!

I will pray for everything to work out for you and very quickly. Also for relief for you.

Many blessings, Sunnyflower

Liked by Hank

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@hopeful33250

Hello @horthog

I just noticed this discussion and your description of your pain as, "like having been burnt and the feeling of glass under my skin." That does sound very much like nerve pain. I recently recovered from Shingles and I described my pain in a similar way.

You said you are taking Gabapentin and it affects the quality of your life. I understand that. Gabapentin is quite effective for nerve pain but it can make you feel foggy and out of balance at times. Is that the same problem you are having? You also mentioned that you are taking Paracetamol. I'm not familiar with that med. Has a steroid ever been tried?

I can imagine how frustrated you must be. As an R.N. (medical professional) you know enough to know that you need more treatment. It must be difficult not to be able to communicate that with a doctor.

How much Gabapentin are you currently taking?

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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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@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

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You are correct in thinking that our NHS is not up to scratch and I do pity you if you end up like us. I have been told that I have to wait 26 weeks before my name even goes onto the waiting list to see anyone in Pain management. There are no Drs, one dr brought out of retirement is leaving this week. the other dr is flown in from the other side of the world, works two weeks on and two weeks, the NHS pay for all of her expences. My friend is the pain management sister, she just picks up the phone and fields the calls from the desperate patients. When they threaten suicide she refers them to their own GP. I have been to ER, sat for 7 hrs in a filthy waiting room, nurses being rude to patients. All they did was to take blood, told me to go home and agreed with my own Computer diagnosis of Acute Cutaneous Nerve Entrapment Syndrome. I was not even examined. You are on your own here. I am still waiting for last weeks CT scan results. I waited 8months for one of my CT scan results. There is little care to be had here, seriously. I have the symptoms of Acnes. God help us.

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@jesfactsmon

@horthog
So you had this surgery for diverticulitis. Now as a result of the surgery you are having pains? Are they happening in the area where you colon was operated on? What is the pain sensation like? Is it sharp, dull, continuous or in short bursts? Is there any burning or pins and needles (probably unlikely), and how severe is the pain on a 1-10 scale? How did you come up with nerve entrapment for a diagnosis? When this pain is happening is there anything you have found to relieve it?

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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.

Liked by Hank

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@sunnyflower

I am so very sorry!! The liberals in our country are trying to install socialized medicine. I can't understand it. It is especially important for chronic pain patients who can't wait so long for care. My heart goes out big time!

I will pray for everything to work out for you and very quickly. Also for relief for you.

Many blessings, Sunnyflower

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

Liked by sunnyflower

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