Dismissing doctors: How do you find a doctor who can help?

Posted by mahenoor108 @mahenoor108, Mar 28, 2022

I have had chronic pain since 10 plus years, I’m 34 now a mother to a 4 year old and life is getting harder day by day
Ana titer positive
D dimer high
All autoimmune panels negative
No other signs of inflammation
But when doctors examine they can feel the muscles are stiff, contracted, rigid.
They think it’s fibromyalgia but nothing has helped me. Since the past 6 years I’ve been on different medicine, therapies everything.
Every other month a new symptom appears and now I don’t know what to do.
Left thigh is the oldest problem, I have sore rigid muscles and I don’t even know what relaxed muscles feel like.
Some doctors think it’s some autoimmune but are unsure.
My new symptoms in the last 2 months
Extreme anxiety/over eating a lot due to anxiety
Insomnia very recent cannot sleep at all
Contracted muscles/ rigid muscles all the time unintentionally I try to realease as soon as I realize they are contracted
Forgetfulness - forgotten a lot of important times of my school/college life
Brain fog
Sleep talking very recent
Pain in my left knee
As soon as I wake up an put my feet on the ground they feel extremely sore.
My neck is tilted to the left side all the time because of extreme pain
In the past I have had high crp
But not anymore.
Can someone please help me.
I can’t function most days

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@evergreen2022

I'm fine with a neurologist referring me gastroenterologist for that area. I am NOT fine with doctors now using it as an excuse. They can't solve it, so they don't believe you. So they send you to someone else. If, as I have done, you have seen all these specialists, and you still get sent somewhere else. Or as the neurologist did, I didn't have Parkinson's Disease, which I am eternally grateful for, so they were done with me. It takes a patient's time and money to run around and see other doctors in specialties you have already seen. Or, back to one for something that was already diagnosed. If I lived close to Mayo Clinic, I would definitely go to their Fibromyalgia center. There is no cure, and some things just don't work. The battle against Fibromyalgia is on going and most of it is up to the patient. Find things that work.And do them.

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Believe me I have been through all this for years, with myself and my daughter. We avoid wild goose chases. I have stuck with my neurologist, who is pretty sharp but probably missing things, because he doesn't do anything! No referrals to other doctors, or to imaging or EMG's (had those in the past) and he BELIEVES me. I have about 15 diagnoses with him and we joke about "having enough codes."

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mahenoor108, the symptoms you listed may be connected to a vitamin B1 (thiamine) deficiency. Unfortunately this deficiency appears to be more common than one would expect yet seems to be under diagnosed. Thiamine and vitamin D require adequate magnesium to become bioactive. Activated thiamine in turn is needed to activate vitamin B6. The B vitamins work better together. The anti thiamine factors listed in the stuttersence link diminish or destroy thiamine. Likewise, magnesium is subject to loss too from pain, stress and others found in the krispin link. There is also a formula to calculate daily magnesium needs. The brain and vagus nerve are sensitive to diminished activated thiamine and a search on that will offer explanations for many other health issues such as autoimmune issues and anxiety. Also do a search on "fibromyalgia thiamine survey" for experience others shared. Although magnesium can relax muscles it may require accupuncture for some to release. Always consult with your health care professional before using any supplement.
https://casereports.bmj.com/content/2013/bcr-2013-009019.short
https://www.eonutrition.co.uk/post/thiamine-fibromyalgia-chronic-pain
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html
https://www.krispin.com/magnes.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3669831/

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@mhowe04

I am so hopeful for you!!!! You’ve definitely taken the right road to relief!!!!! Remember some things work well ….some don’t….some things work for a while then you may have to try something else!!! At least you’re at the right place and not filling your body with pills!!!!
Good Luck!!!!

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Thank you. Right now I am two days away from my first Cervical Branch Block.Anxiety is running high,I soo much want this to work but since I don’t have a full diagnosis of all my symptoms it is only the first step. Immediately following I go to Physiatry for Duralane (sp) injections in each knee. Funny how one of the things that terrified me as a child I am looking forward to but yeah, I am not looking forward to that four foot long needles lol.

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@daliea

Thank you. Right now I am two days away from my first Cervical Branch Block.Anxiety is running high,I soo much want this to work but since I don’t have a full diagnosis of all my symptoms it is only the first step. Immediately following I go to Physiatry for Duralane (sp) injections in each knee. Funny how one of the things that terrified me as a child I am looking forward to but yeah, I am not looking forward to that four foot long needles lol.

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I’ll be thinking about you!!! I just had my second hip replacement last Thursday!!!
Am doing very well and look forward to less pain myself!!!

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@daliea

Thank you. Right now I am two days away from my first Cervical Branch Block.Anxiety is running high,I soo much want this to work but since I don’t have a full diagnosis of all my symptoms it is only the first step. Immediately following I go to Physiatry for Duralane (sp) injections in each knee. Funny how one of the things that terrified me as a child I am looking forward to but yeah, I am not looking forward to that four foot long needles lol.

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So Cymbalta can be injected into joints?! Have you tried PRP (platelet rich plasma)?

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@windyshores

So Cymbalta can be injected into joints?! Have you tried PRP (platelet rich plasma)?

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No,not Cymbalta they inject a pain medication into my spine then I do a pain journal hour by hour that day.The goal is to reduce the pain by at least eighty percent to consider it successful if it does I will go back and get an injection that will last for months. I have osteoporosis which has damaged my spine so that is where they are starting .

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I am having Duralane injections in my knees not my spine. Pain medication is injected into my spine.

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@daliea

I am having Duralane injections in my knees not my spine. Pain medication is injected into my spine.

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Yes I commented that they were injecting Duralane (Cymbalta) in your joints. Meaning knees. I did not know Cymbalta was used as an injection, that's all.

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Hi, I came here hoping to find help for Pseudomonas Aeruginosa in my lungs. My symptoms are so similar to yours. Only mentioned this as food for thought. Hope somehow this helps. Ronnie L.

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@windyshores

Yes I commented that they were injecting Duralane (Cymbalta) in your joints. Meaning knees. I did not know Cymbalta was used as an injection, that's all.

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The generic name for Cymbalta is duloxetine . Duralane is not the same thing. Easy mistake, I had to Google to make sure because I can’t take Cymbalta.

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