No diagnosis chronic pain

Posted by liv1020 @liv1020, May 7, 2020

Hi everyone I'm new here. I would love some advice/comments on what I've been dealing with for around four months. It's a long story thankyou if you read and respond.
Around the end of January I started getting intense burning pain on the top of my legs and middle of abdomen. No rash or Marks on the skin just intense pain. I tried ibuforen, lidocaine gel, advil tylenol nothing helped. Started with primary care doctor she said to use lidocaine gel and ordered blood test. Blood test results all fine except for slightly low vitamin d deficiency. She said to start vitamin d pill I have been for months levels gone up and no relief in pain. Then went to pain clinic they did cortisone injections directly to abdomen. The injections gave me a horrible reaction that I ended up in the er for. Started on predisone and benadryl for 10 days. Once allergic reaction was gone same exact pain. They started me on lyrica made pain worse. I went to a dermatologist who said that it had to be nerve pain bc theres no rash on the skin she said to go to a neurologist. I went to him he did blood test ct scan and everything normal. I'm at a loss šŸ™ I've been on lyrica, gabapentin, tropokendi, cbd cream from neurologist, acupuncture/herbs, chiropractor and laser treatment, muscle relaxer and tramadol. I'm not on any medications right now everything seems to make it worse. And creams I put on my skin break it out horribly. I'm at a loss and so miserable. This is such a mystery and no doctors can help me. I want my life back šŸ™ !!!

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@richman54660

@mrea what is the nature of the pain? Is is in one spot, like the bottoms of the feet, or all over? Is it bilateral (both feet) or just one foot? Your doctors should be asking you these questions. If it is bilateral it is, most likely, generated by the spinal nerves and a possible nerve pinch. It could be a sciatica (which is actually a symptom, but involves pinching the nerve either where it comes out of the spine or at the piriformis muscle (I have some sciatica)). Google the ā€œdermatomesā€ and pain and youā€™ll see the pain might come from far away. Is it burning/tingling or electric pain (nerve pain) or a duller ache (more often muscles, etc.; different cause entirely - often myofascial pain). These are questions to ask / things to research. Stretching and exercise can help some of these conditions as can diet and adding supplements. I was able to get off nortriptyline with the right program (see my comments to others in this thread for specifics). Also, you most likely have pain sensitization going at this time which amplified the pain. Dr. Jonathan Kuttner has a book called ā€œlife after painā€. It is very readable. He also has various courses he offers affordably about how to retrain your pain system on his website ā€œlife after painā€. His techniques might help you dial down (and possibly eliminate) the pain. Good luck.

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Thanks a million for this, my friend 😁. Itā€™s not Sciatica as Iā€™ve had loads of X-rays, CT scans and MRIs done over the past 10.5 years. Iā€™ll be interested to see what Mayo doctors have to say. I hope to have all my medical records before we leave....I faxed off all the requests 3 weeks ago.

What should I do if I donā€™t get all my records on time?

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@mrea

Thanks a million for this, my friend 😁. Itā€™s not Sciatica as Iā€™ve had loads of X-rays, CT scans and MRIs done over the past 10.5 years. Iā€™ll be interested to see what Mayo doctors have to say. I hope to have all my medical records before we leave....I faxed off all the requests 3 weeks ago.

What should I do if I donā€™t get all my records on time?

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@mrea What you have to realize is doctors look for pain patterns. Stabbing pain in front of hip = hip arthritis, if this other pain, then sciatica, etc. However, if you have an atypical presentation then you won't get diagnosed properly. Also, Dr. Kuttner mentions this in the "life after pain" book - we all have abnormalities in our spines, other parts as we age. Someone else might have worse spinal discs (or other body parts) but no pain, someone with seemingly good discs has more pain. You might not show anything on images, but something is amiss. Pain can really not generally be diagnosed from imaging - perhaps with the exception of extreme bulging of discs - then it's pretty obvious what the source is. Otherwise, quite honestly, they are guessing. If you've noticed, on letters it often says the word "impressions". They are stating their expert opinion. It should be strongly considered but not necessarily chiseled in stone, either (also things change in our bodies with time).
Most of us with chronic pain do have some degree of pain sensitization, too (hence the "life after pain" programs to minimize pain sensitization).
Ponder the nature of your pain - is it nerves or is it muscle pain. That was not described in detail. Nerve pain: healthy fats + some supplements like turmeric, perhaps other vitamins. There is actually a protocol for neuropathy pain called "the protocol works" and there is a new one called "the protocol 525". There is a facebook group and with some hunting around you can find the protocols. He uses ridiculously high levels of fats (hemp seed oil) amongst other things and tends to say if you don't do this exact thing it won't work. I don't believe that and I came up with my own protocol for supplements based on research I did that uses lower levels of vitamins, minerals, healthy fats and supplements like turmeric and flavinoids and higher vitamin C that seem to help me. Be careful, because some things, like some of the B vitamins, if taken at too high a dose can actually cause neuropathy. If you have the Muscle pain - get the muscles to unlock/relax (i.e. loosen "trigger points"' but often microcirulation issues are present; Perhaps see Dr. Fors' book "why we hurt and how we heal"). Either way you might be able to make a lot of headway with the right stretching/exercise/self-massage for trigger points program as well as diet (and supplements).

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@mrea

Thanks a million for this, @richman54660 and to the group. You asked me questions which no doctor has bothered to ask which is pretty awesome!

The one thing Iā€™m panicking about is the possibility that I may have ALS....my Chiropractor suggested that I have Mayo check this out because none of the ā€˜typicalā€™ meds for Fibromyalgia have worked for me and I have experienced progressive muscle weakness from the feet up...ALS is apparently ascending pain....and thereā€™s a few times a month I do struggle to swallow food.

Any thoughts?

All my best! SlaĆ­nte 🍀

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@mrea You do need to see a doctor. Of course, I'm not a medical doctor, so any suggestions need to be filtered through that knowledge. In your case, perhaps a neurologist? If it is a neuropathy that you have, it is not uncommon that they start far away and work their way up (this process is called "dying back". You could search for "dying back in neuropathy" and you'll see lots of articles. Supplements and healthy fats can help stabilize the nerves - see my other comment. I also sent you an e-mail message.

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Hi all - I thought I'd jump in and share a story that I received from a fellow Connect friend, Kia, yesterday. It culminates with a Small Fiber Neuropathy diagnosis however, explores a variety of pains along with feelings of fear, uncertainty and frustration in not knowing what's wrong inside our bodies. This is a universal feeling no matter the diagnosis.

https://www.washingtonpost.com/health/pains-chills-fatigue-vomiting-and-vertigo-plagued-me-small-fiber-neuropathy-caused-it-all/2020/06/26/c9d756e0-3e0c-11ea-8872-5df698785a4e_story.html
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@rwinney

Hi all - I thought I'd jump in and share a story that I received from a fellow Connect friend, Kia, yesterday. It culminates with a Small Fiber Neuropathy diagnosis however, explores a variety of pains along with feelings of fear, uncertainty and frustration in not knowing what's wrong inside our bodies. This is a universal feeling no matter the diagnosis.

https://www.washingtonpost.com/health/pains-chills-fatigue-vomiting-and-vertigo-plagued-me-small-fiber-neuropathy-caused-it-all/2020/06/26/c9d756e0-3e0c-11ea-8872-5df698785a4e_story.html

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@rwinney Good article. I believe these are the small unmyelinated fibers (as are the heat and pressure sensors of our peripheral nerves). As such, these small nerve fibers often get symptoms first. A thorough neurological exam should reveal these deficits. Often things like difficulty focusing eyes, IBS symptoms (some cases), orthostatic hypotension (almost fainting when you stand up), etc. are overlooked by patients focusing on their other chief complaint(s). If symptoms are serious see a neurologist first.

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@richman54660 Agreed, 100%. Symptoms can be deceiving and misleading.

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@mrea

Thanks a million for this, my friend 😁. Itā€™s not Sciatica as Iā€™ve had loads of X-rays, CT scans and MRIs done over the past 10.5 years. Iā€™ll be interested to see what Mayo doctors have to say. I hope to have all my medical records before we leave....I faxed off all the requests 3 weeks ago.

What should I do if I donā€™t get all my records on time?

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@mrea If you don't get your records in time write down where intensity of your pain frequency also any test you,e had and where ,Dr s names as some of these test can be sent directly to them

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@lioness

@mrea If you don't get your records in time write down where intensity of your pain frequency also any test you,e had and where ,Dr s names as some of these test can be sent directly to them

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@mrea and @lioness Well said. A short summary is best. Remember, those of us with significant histories often overwhelm our Dr. and the visit may not go as well as expected. A short 1 page summary is better than 3 pages (which might overwhelm). Be sure to mention current chief complaint(s)/major (and minor symptoms), major impressions from past doctors and tests results from others and current and past meds. This might be a case where less is more. If you give him 50 pages of docs he might not really look them over (sad to say).

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@lioness

@mrea If you don't get your records in time write down where intensity of your pain frequency also any test you,e had and where ,Dr s names as some of these test can be sent directly to them

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Thanks a million for this! Fortunately, I do have my most recent records from my GP, psychiatrist and all my images from my xrays, CT scans and MRIs. I am praying my records from my neurologist and my nerve conduction study records get to me in time 🤞

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@richman54660

@mrea and @lioness Well said. A short summary is best. Remember, those of us with significant histories often overwhelm our Dr. and the visit may not go as well as expected. A short 1 page summary is better than 3 pages (which might overwhelm). Be sure to mention current chief complaint(s)/major (and minor symptoms), major impressions from past doctors and tests results from others and current and past meds. This might be a case where less is more. If you give him 50 pages of docs he might not really look them over (sad to say).

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Thank you so much! I was actually planning to do exactly this but itā€™s a good reminder....seems I forget a lot things unless I write it down! I think chronic pain truly messes with our ability to focus.

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