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™ !!!

Interested in more discussions like this? Go to the Chronic Pain Support Group.

I'm doing Tramadol once a day.

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@cldmeyers

I'm doing Tramadol once a day.

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@liv1020 & @cidmeyers Sounds to me like the neuropathy you are describing needs one more tweak in the treatment. I use about 1/4 teaspoon of kitchen turmeric in a glass of warm (not hot) water whenever the neuro gets too strong. That plus acetaminophen usually works pretty well. But do not take too much of either. Tramadol is addictive, and turmeric is a blood thinner, like warfarin. But this is all I have found for this same set of crap.

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@cldmeyers

I'm doing Tramadol once a day.

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@cidmeyers Good since 05 when I fractured my back this is the only thing that gives me relief Then is was 4-6 a day now I take 1-2 as needed so usually at 1 a day .

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@liv2020. Have you thought about seeing a gastroenterologist? It may sound counterintuitive, but it may be your gut telling you something is wrong? Just a thought. Best!

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To the group, Iā€™m new here. I have suffered chronic feet pain for almost 11 years and have been to every single specialist, PT, functional doctor you can think of. I finally broke down and am going to Mayo at end of this month. No doctor here can figure this out nor do I think theyā€™re inclined to. All the gabapentin, Lyrica, Cymbalta and even Vicodin when the pain is off the charts....nothing resolves this pain. I want a real diagnosis and not to be tossed prescription after prescription, some of which makes the pain actually worse and just isnā€™t worth it. I keep fighting the good fight but at this stage, I am incredibly weary of doctors. The thing that chaps my hide is that I have to pay an exorbitant amount of money out of pocket to go to Mayo. If my doctors here would just bother to all get on a conference call together and brainstorm, Iā€™m sure theyā€™d be able to find root cause. Our system just isnā€™t set up that way so I have to deal with realty.

Thanks for listening and am delighted to be here!

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@mrea

To the group, Iā€™m new here. I have suffered chronic feet pain for almost 11 years and have been to every single specialist, PT, functional doctor you can think of. I finally broke down and am going to Mayo at end of this month. No doctor here can figure this out nor do I think theyā€™re inclined to. All the gabapentin, Lyrica, Cymbalta and even Vicodin when the pain is off the charts....nothing resolves this pain. I want a real diagnosis and not to be tossed prescription after prescription, some of which makes the pain actually worse and just isnā€™t worth it. I keep fighting the good fight but at this stage, I am incredibly weary of doctors. The thing that chaps my hide is that I have to pay an exorbitant amount of money out of pocket to go to Mayo. If my doctors here would just bother to all get on a conference call together and brainstorm, Iā€™m sure theyā€™d be able to find root cause. Our system just isnā€™t set up that way so I have to deal with realty.

Thanks for listening and am delighted to be here!

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@mrea Hello and welcome to Connect! We are delighted to have you. Im sorry for your long journey of foot pain and sincerely hope Mayo brings you a clear diagnosis and path forward. Im sure you will find many relatedable stories through the various threads in this forum. Others life experiences and trials and tribulations are a nice compliment to medical care. I myself have Small Fiber Peripheral Polyneuropathy and will be attending Mayo's Pain Rehabilitation program in October. I'm on medicare and needed to choose an expensive supplement plan which allowed me out of network care at Mayo. Paying out of pocket .....OUCH! I wish you all the best as you prepare for hope and clarity for your future.
Be well
Rachel

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@mrea

To the group, Iā€™m new here. I have suffered chronic feet pain for almost 11 years and have been to every single specialist, PT, functional doctor you can think of. I finally broke down and am going to Mayo at end of this month. No doctor here can figure this out nor do I think theyā€™re inclined to. All the gabapentin, Lyrica, Cymbalta and even Vicodin when the pain is off the charts....nothing resolves this pain. I want a real diagnosis and not to be tossed prescription after prescription, some of which makes the pain actually worse and just isnā€™t worth it. I keep fighting the good fight but at this stage, I am incredibly weary of doctors. The thing that chaps my hide is that I have to pay an exorbitant amount of money out of pocket to go to Mayo. If my doctors here would just bother to all get on a conference call together and brainstorm, Iā€™m sure theyā€™d be able to find root cause. Our system just isnā€™t set up that way so I have to deal with realty.

Thanks for listening and am delighted to be here!

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@mrea Welcome to Mayo Connect. We are all patients, family members, caregivers here, and share our journeys with others.

Eleven years is a long time to have to deal with chronic pain! If you haven't already, writing down your pain history and what has been tried, along with success or failure, and when/how the symptoms affect you, will go a long way towards your new team helping you. It also helps you feel part of all the decision-making. It may point out patterns to them.

Which Mayo campus will you be going to? How can we help you today?
Ginger

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@mrea

To the group, Iā€™m new here. I have suffered chronic feet pain for almost 11 years and have been to every single specialist, PT, functional doctor you can think of. I finally broke down and am going to Mayo at end of this month. No doctor here can figure this out nor do I think theyā€™re inclined to. All the gabapentin, Lyrica, Cymbalta and even Vicodin when the pain is off the charts....nothing resolves this pain. I want a real diagnosis and not to be tossed prescription after prescription, some of which makes the pain actually worse and just isnā€™t worth it. I keep fighting the good fight but at this stage, I am incredibly weary of doctors. The thing that chaps my hide is that I have to pay an exorbitant amount of money out of pocket to go to Mayo. If my doctors here would just bother to all get on a conference call together and brainstorm, Iā€™m sure theyā€™d be able to find root cause. Our system just isnā€™t set up that way so I have to deal with realty.

Thanks for listening and am delighted to be here!

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@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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@oldkarl

@liv1020 & @cidmeyers Sounds to me like the neuropathy you are describing needs one more tweak in the treatment. I use about 1/4 teaspoon of kitchen turmeric in a glass of warm (not hot) water whenever the neuro gets too strong. That plus acetaminophen usually works pretty well. But do not take too much of either. Tramadol is addictive, and turmeric is a blood thinner, like warfarin. But this is all I have found for this same set of crap.

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@liv1020 @cldmeyers myofascial pain can have some burning and tingling, too, in addition to a deep ache. However, nerve pain can be neuropathy, too. So it could be either. Diet (adding more healthy fats, etc.) and gut health do matter (please see my prior detailed comments in this thread) for either neuropathy or myofascial pain.

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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, @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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