Please help: Undiagnosed chronic pain of the limbs

Posted by kate22 @kate22, Nov 28, 2018

Hi! I am 20 years old girl who is desperate for answers. Any. I have chronic pain of limbs (doctors in my country are not able to tell if it is muscles or what), I an not even sleep properly because I can not lie on my tights.
Everything started three years ago, I felt a sharp bad pain in my left tight, I was in school, not in a gym, not outside. The pain went on and off for few weeks, slowly more and more parts of my body started to ache. One tight, then another, one shoulder, then another,… And it came more and more often. Until now, now it does not go away. During this three years I stopped any activity, cause I am so weak I can not even go up the stairs. At least one doctor discovered a little problem with L carnitine, so these days I am not sleeping all days cause I am taking pills (or other forms of it).
Rheuma, arthitisis, MS, lupus and other classics are ruled out. I do not know what to do. I do not want to take pain meds, cause my stomach is not so strong.
Summary: chronic pain (limbs, fingers,…), problems with sleeping, weakness, and I almost forget my almost falling cause my knees and hips are lazy to hold me or whatever
PS: please if you have any tips please help me
PSS: does anyone have symptom which I can only describe as if my hands do not know what they are doing (I just sometimes miss thing I would like to catch/ hold even if I am looking at it)?

@healthytoday

Hot tubs, swimming, stretching, avoiding negative people. Try on things. And notice what helps and what does't.

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@healthytoday I agree with finding what works for you I encourage you to try everything one at a time, and consistently for at least 10 to 30 days to see if there is any improvement. When you stop it, be sure to check in see how you’re feeling. I find it best to keep the simple notepad with scales of pain, fatigue, etc. Quick to fill out and stay on top of so you can truly track how a particular treatment helps you. Over time you will add different therapies, medications, meditations, exercises, and drop others, etc. that will become your personal “prescription” of how to deal with what you feel best with. We are all individuals, and respond differently to the various treatments available to us. No one person’s experience is going to be exactly like the others. Experiment! Hoping always for healing, but the alternative is learning to manage. Life can be livable again. Personally I have found a combination of good health practices, good doctors, and alternative therapies work best for me. I hope you will find your path soon.

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@healthytoday

Hot tubs, swimming, stretching, avoiding negative people. Try on things. And notice what helps and what does't.

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Hello @healthytoday

I really like your idea of "trying on" different activities and thoughts! When dealing with chronic health problems it can take a while to find what works. That includes thinking, activities, meds and even the right medical team.

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@ckeys

@healthytoday I agree with finding what works for you I encourage you to try everything one at a time, and consistently for at least 10 to 30 days to see if there is any improvement. When you stop it, be sure to check in see how you’re feeling. I find it best to keep the simple notepad with scales of pain, fatigue, etc. Quick to fill out and stay on top of so you can truly track how a particular treatment helps you. Over time you will add different therapies, medications, meditations, exercises, and drop others, etc. that will become your personal “prescription” of how to deal with what you feel best with. We are all individuals, and respond differently to the various treatments available to us. No one person’s experience is going to be exactly like the others. Experiment! Hoping always for healing, but the alternative is learning to manage. Life can be livable again. Personally I have found a combination of good health practices, good doctors, and alternative therapies work best for me. I hope you will find your path soon.

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I really like your approach. I'd do that also, except I tend to put notes in my brain. But, when very ill, better to write it down since one is usually to weak to do much else.

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@gailb

@oregongirl

I can "hear and feel" the frustration in your posts. I'm so sorry you've had such negative experiences with doctors of all kinds over the years. At 77 years old you're not likely to change your mind. Your unhappiness with the medical system has led you to approach your life and health with exploration of alternative methods of help. That is good for you, but since we're all different may not work for others here. I encourage everyone I know to do research on diagnoses of their health conditions or prescribed medications, using Mayo Clinic or other reputable sites. The more informed we are as patients, the better prepared we are to make responsible decisions a out our health.

Having worked in non-medical positions for 7 years in hospitals, I know that doctors are smart people who have spent many years (10+) learning their professions. But they are not perfect and they make mistakes. It would not be possible for them to know everything about each illness, condition, or person with whom they deal daily. A major part of what they do is seek to eliminate potential problems through tests. That's why if at the end of their tests you're not satisfied with what they found or didn't find, then you must search for a specialist to do further diagnosis. Mayo is excellent in this regard as are other clinics that specialize in diagnosis. I respect my doctors, but I also ask lots of questions and occasionally challenge something they say or their misinterpretation of what I've said. I think my job with my doctor is to give her/him as much information as possible about my problem, and work with him/her to find the solution.

You are a lucky person to be as healthy as you are and I admire your outlook on living a full life for as long as you are here. I agree with that philosophy. I keep hoping Texas and the Federal Government wake up and approve Marijuana use nationwide. It is so much better than other kinds of pain relief. I have joined the group NORML, that works to legalize Marijuana. You may want to join as well. Have a good night Oregon girl.

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I'm agree with you, yep. Also, sometimes another approach, another way to look at a problem is helpful. I have a friend with chronic headaches. He's gone the medical route with surgery to his sinus cavity which "might" have been the problem, acupuncture, diet changes, cbd, etc. After two years, he's improved but not cured. However, he has emotional issues with his wife and his past, and yet, doesn't want to explore the psychological/emotional issues. I think he's too lazy. Sounds harsh, but fierce self inventory in relationships with a possible connect to illness is a rough path and not for the faint at heart. Sometimes looking at the under side of those rocks of life really can revel useful information that can lead to healing.

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@colleenyoung

Hi @oregongirl, I was wondering about you. It's been a while since we heard from you. Your frustration is palatable. I think many who live with chronic pain understand the frustration of the exhausting pursuit of relief. I commend you on reviewing all the medications you are currently taking and figuring out which you need and those you perhaps don't. I know you said you're fed up with doctors, but do you have one doctor with whom to review your medications? A pharmacist is also a good person to consult with.

Several members on Connect have talked about learning alternative methods of pain management through pain clinic like the Mayo Pain Rehabilitation Clinic:
– Cognitive behavior class, https://connect.mayoclinic.org/discussion/cognitive-behavior-class/
– Pain rehabilitation, https://connect.mayoclinic.org/discussion/pain-rehabilitation-21da8b/

On Connect, the very first Community Guideline is
1. Be careful about giving out medical advice
– Sharing your own experience is fine, but don't tell other members what they should do.
(https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/)

You know what is best for you, but be careful about telling others what they must do, okay?

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My pharmacist has been so helpful so many times. She seems to remember when to give me the three months allotment verse one month depending upon where I am in my insurance cycle.

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@healthytoday

I'm agree with you, yep. Also, sometimes another approach, another way to look at a problem is helpful. I have a friend with chronic headaches. He's gone the medical route with surgery to his sinus cavity which "might" have been the problem, acupuncture, diet changes, cbd, etc. After two years, he's improved but not cured. However, he has emotional issues with his wife and his past, and yet, doesn't want to explore the psychological/emotional issues. I think he's too lazy. Sounds harsh, but fierce self inventory in relationships with a possible connect to illness is a rough path and not for the faint at heart. Sometimes looking at the under side of those rocks of life really can revel useful information that can lead to healing.

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@healthytoday I so agree with everything you said. Interesting how people are averse to change even when the status quo is holding them back from living a freer and more healthy way of life. I don't think what you said is harsh at all – sometimes plain speaking is the only way to break through the denial that things are not getting better in their lives. It is often easier to blame another person than look at what needs to be done for inner and outer healing.

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