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 🙁 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 🙁 !!!

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Have you looked into Mast cell activation syndrome (disease)? After 2 years of no-diagnoses for my grandson's everyday nausea and abdominal pain, (he had every medical procedure in the book) our research found MCAS. We have hundreds of mast cells in our body, which are there to help control reactions to different things. Sometimes, they run amok and cause problems rather than fixing them. We watched a video done by Ilana Jacqueline who suggested a MRT blood test for food sensitivity. My grandson went through food allergy testing, but nothing showed up. This MRT test (pricey) determined he was very sensitive to turkey...of all things! He had turkey/cheese sandwiches every day during his first 2 years of high school! There were several other things (food as well as chemicals) that were causing triggers in his body. Having had type 1 diabetes since he was 10 months old, his parents thoughtfully gave him mostly zero carb foods and beverages. Artificial sweeteners like aspartame are in almost everything he has been consuming all those years. Read about aspartame....it turns into formaldehyde once it warms up in your stomach. How gross is that? Anyway, since he has stopped drinking diet sodas, his daily nausea and pain have stopped. We also watch the other things that he is sensitive to, such as corn. Corn is in many products, so it's pretty difficult. He is also sensitive to polysor80, which is an emulsifier used to make things creamy, such as ice cream, salad dressings, etc. There are a bunch of others that we are trying to eliminate from his diet, but I have to say, that we believe the aspartame has been the culprit. Just a suggestion. Hope you can get some relief. We understand your frustration. We had to do our own research to get the doctors to authorize blood tests and procedures, just to rule out so many other possible diseases.

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@liv1020

I hope the chiropractor helps you! So hard to be in constant pain with no relief 🙁

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Thank you. I've done a lot of the things you've suggested. Worked with my gp and physical therapists. With my doctor's blessing, I'm going to a chiropractor next week. Looking forward to it. This was all brought on by a severe fall on concrete.

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@cldmeyers

Thank you. I've done a lot of the things you've suggested. Worked with my gp and physical therapists. With my doctor's blessing, I'm going to a chiropractor next week. Looking forward to it. This was all brought on by a severe fall on concrete.

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@cldmeyers Did you have an MRI after such a bad fall?

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@bookahol

Yes that is the way my fibro was diagnosed. I had 15 of the 18 pressure points. I have suffered from this disease for over 30 years. I have tried everything known to humankind. Absolutely nothing has worked. It is a struggle each day to stay positive when every part of my body is hurting.

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@bookahol You had more then I did . It is a struggle but I found away to limit my pain. Here is what I do first of all the meds for this dont help me . Some I had side effects from them worse then the fibro . I found that more magnesium is a God send it really helps me There are different types so the one I use is Magnesium Malate , also MSM, my magnesium even thought I take 450mg a day and my labs are within normal range . I think for those who dont have fibro it lower but cant remember what it is . Exercise everyday not strenuous is most helpful also I do meditation to check your body from head to toe and breathing to relax that part by visualizing I cant eat nightshade vegies . This sets it off. I wish you the best and these are only things that help me , forgot Epsom Salts bath at night before bed . Let me know if this is something that will help you be well

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@lioness

@migizii Jumping in here . I see you asked about Fibromyalgia . I have had it since the 90,s The way the Dr. found out is there are 18 trigger points on your body . I had 11 of 18 . Did your Dr check these out . Back then there was no other way except the trigger point and he asked certain questions.

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That's interesting I've never had that test done before. I will ask the neurologist. When I first went he did blood work to check for nerve damage but come to find out it was standard bloodwork/vitamin levels

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@bookahol

Yes that is the way my fibro was diagnosed. I had 15 of the 18 pressure points. I have suffered from this disease for over 30 years. I have tried everything known to humankind. Absolutely nothing has worked. It is a struggle each day to stay positive when every part of my body is hurting.

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I'm sorry to hear you're suffering as well. I wish there was an easy solution to all of this

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@grammajackie

Have you looked into Mast cell activation syndrome (disease)? After 2 years of no-diagnoses for my grandson's everyday nausea and abdominal pain, (he had every medical procedure in the book) our research found MCAS. We have hundreds of mast cells in our body, which are there to help control reactions to different things. Sometimes, they run amok and cause problems rather than fixing them. We watched a video done by Ilana Jacqueline who suggested a MRT blood test for food sensitivity. My grandson went through food allergy testing, but nothing showed up. This MRT test (pricey) determined he was very sensitive to turkey...of all things! He had turkey/cheese sandwiches every day during his first 2 years of high school! There were several other things (food as well as chemicals) that were causing triggers in his body. Having had type 1 diabetes since he was 10 months old, his parents thoughtfully gave him mostly zero carb foods and beverages. Artificial sweeteners like aspartame are in almost everything he has been consuming all those years. Read about aspartame....it turns into formaldehyde once it warms up in your stomach. How gross is that? Anyway, since he has stopped drinking diet sodas, his daily nausea and pain have stopped. We also watch the other things that he is sensitive to, such as corn. Corn is in many products, so it's pretty difficult. He is also sensitive to polysor80, which is an emulsifier used to make things creamy, such as ice cream, salad dressings, etc. There are a bunch of others that we are trying to eliminate from his diet, but I have to say, that we believe the aspartame has been the culprit. Just a suggestion. Hope you can get some relief. We understand your frustration. We had to do our own research to get the doctors to authorize blood tests and procedures, just to rule out so many other possible diseases.

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Thank you very much for sharing this with me! I will be looking into this. I forgot to mention I've been to an allergist who was very nice and listened but he said that it woildnt be beneficial for me to get the allergy test since he said my symptoms seem to be more internal. And not rashes digestive etc

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@lioness

@bookahol You had more then I did . It is a struggle but I found away to limit my pain. Here is what I do first of all the meds for this dont help me . Some I had side effects from them worse then the fibro . I found that more magnesium is a God send it really helps me There are different types so the one I use is Magnesium Malate , also MSM, my magnesium even thought I take 450mg a day and my labs are within normal range . I think for those who dont have fibro it lower but cant remember what it is . Exercise everyday not strenuous is most helpful also I do meditation to check your body from head to toe and breathing to relax that part by visualizing I cant eat nightshade vegies . This sets it off. I wish you the best and these are only things that help me , forgot Epsom Salts bath at night before bed . Let me know if this is something that will help you be well

Jump to this post

I've heard of magnesium helped I've tried magnesium vitamin d prenatal supplements.been trying to stick with vitamins for a while and not give up but ah it's hard when no difference. Have you tried notriprityline anti depressant/nerve medication?

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@liv1020

That's interesting I've never had that test done before. I will ask the neurologist. When I first went he did blood work to check for nerve damage but come to find out it was standard bloodwork/vitamin levels

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@liv1020 Yes for fibromyalgia you have as I said 18 trigger points on your body when pressed you go through the roof they are so sore . Ask your Dr about them have the rheumatologist check them .

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@liv1020

How did they diagnose you with fibro if you dont mind me asking? I've had blood tests and a ct scan with contrast. Insurance wont approve an mri 🙁 I wish I lived near mayo I've been to 2 pain clinics near me they just want to start me on a low dose antidepressant to see if that helps.

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I was referred to the Pain Rehabilitation Center with concerns related to chronic fatigue and pain. My appointment consisted of meeting with a nurse practitioner (I think that’s who it was) who took a detailed history and conducted a pain point exam (consisting of touching a number of places on your body to see how you respond-the touch seemed light, but I did not respond that way to most of the areas). Following this, I met with a doctor who also went through everything we previously talked about;asked for additional information; and formed the diagnosis. He determined that although I had some profound fatigue, but I did not meet criteria for chronic fatigue as he felt the fatigue was how I managed the pain, in many instances. At that point, he recommended I stay for the two day class (I guess it was two days, not 1 1/2) to learn about fibromyalgia and how to try to manage it in a healthier way. It was very helpful in understanding that I could believe this to be true but that there is really no cure......just lots of discipline to relearn patterns and try to learn balance and when to retreat😊🧐. I hopes this is what you were asking and good luck in your journey and be well.

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