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Illusive Diagnosis, Pain Increasing
I visited Mayo in Rochester this past Fall and was diagnosed with small and large fiber peripheral neuropathy. However, the neurologist said what I am experiencing could not all be explained by that diagnosis. He felt there was a skeletal muscular component, as well. The doctor who took me into the clinic felt I could find the answers at home and no longer needed Mayo. I have since gotten some additional diagnosis. The foot and ankle doc did some tapping and mentioned tarsal tunnel syndrome. He later said it is not ordinary TTS as my symptoms are more widespread. He also suspects there may be some mild CRPS in the left foot (everything is worse on the left than the right). He put me in an ankle brace until we can learn more and the brace has been very effective. It has confirmed my suspicion that ankle movement triggers many of my foot symptoms. In the meantime, I am noticing increasing pain in my other joints. My shoulder pain is uncomfortable enough that I have an appt to see my GP tomorrow to make sure I didn't knock it partway out of its socket. I spent last year going from doctor to doctor, feeling like I am crazy. Now that I am finally starting to put together pieces of the puzzle I am nervous about adding more symptoms/information to the list of my complaints. I am worried that I will be seen as attention seeking or a hypochondriac We know there is odd nerve stuff going on but with the increased joint pain, I feel there is more to the story. The phrase muscular skeletal is thrown around often but no official diagnosis . . . yet. Anyone else dealing with an overlap of neurological and muscular skeletal issues? I am not looking to replace my doctors. Just want to feel less "crazy".
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I understand. I “went” until I dropped. I still have that drive even now when my body won’t let me so that is why I advocate. Sometimes I bite off more than I can chew.
Your ankle feels better in the brace because it’s unstable. But give it a break when you are not up and about. That may help with the swelling. Put it up if you have a recliner. I had mine in a brace too before they knew what was wrong with me. 😉
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2 ReactionsI understand about losing weight to @jeanniem although I will say it may or may not help. Weight helps joint issues not nerve so much.
In reality, losing weight seems to only light the nerves on fire for me but taking the weight of my left knee that needs replaced (but can’t be because of the CRPS) is like a godsend.
Yeah, I know. Plus, the swelling has gone down in my feet since I’ve lost weight.
I’ve lost 13lbs in 12 days. Not bad for someone who can’t NOT eat or move past the chair being a few steps. It can be done!
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2 ReactionsGreat job! That is an amazing accomplishment!
I encourage weight loss no matter what! It makes you feel better. Lifts the ego which we all need sorry to say. And it’s healthier for our bodies.
Pain wise, please don’t expect miracles or less of it. Should we hope? Of course! Hope is what keeps our 🌎 spinning!
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1 ReactionBecause I am diabetic and overweight I have fought with self-blame. It doesn't matter that my A1C is under 7 or that my docs have reason to believe part of this is genetic. One of my clients is going through the Intuitive Eating book and/workbook. I purchased them so I could guide her through some of the more emotional aspects of her journey and then decided I should do the workbook for myself. Since I have not had much luck with dieting I thought a new approach might help. I have fluxuated up and down by about 30 lbs since college. I am not much above my college weight currently but I would guess my fat to muscle ratio is less stellar. :-p
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1 ReactionSelf-blame isn’t easy to deal with whatever the reason. Anorexia is the thorn in my side. I’ve struggled with the mental aspects of that nightmare my entire life— since I was fifteen years old anyway. Fluctuation with weight is driven for many reasons, my friend.
The worst day of my life was when I tipped the scales at 218.
Depakote does cause severe weight gain and bone break down. I don’t care what the manufacturer claims, or an ignorant doctor who tries to tell the patient that all they need to do is control their eating habits, especially one who has anorexia. Nothing works with that drug except to go off of it! It’s dangerous.
After med adjustments by a more knowledgeable neurologist and one who actually KNEW the harmful affects of Depakote, my weight dropped like a stone to 135. Then came CRPS and medication additions, job losses, lifestyle changes. The weight began to creep ever so up again.
I tipped the scales again at 177 and freaked as any “proper” anorexic would do. But I’ve conquered the knee-jerk reactions that the emotional, depressed, part of me causes to make dumb decisions or see a fat person in the mirror when a thin person exists. I’ll never be cured of anorexia but nobody understands that but me and my husband. When I’m sick, I’m almost thankful not to be able to eat until I remember it’s not the illness that is making me physically ill causing it. This is a psychological battle that sneaks up on me. Be careful of yours.
The pain levels you suffer will be impacted by anything you do and experience, physical, mental, or emotional, whether you know it or not.
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1 ReactionI was diagnosed at Mayo with fibro about five years ago and attended a two day class. Although you learn a number of mind body skills (as I am a licensed clinical social worker, I was already using many of them), there was limited information for me in regard to the help they could provide. They would additionally offer Lyrica (I think, but I was not interested); but I did follow up with a sleep study (got results indicating a sleep disorder and got great help there ) and did attend therapy for myself for a short time, as the therapist assured me I was in a good emotional state given my health and work challenges.
Thanks for sharing! I am a licensed mental health therapist so we are vocational siblings. 🙂 I should find a good therapist. I do a lot of somatic work with my clients and, while I try to apply those things to myself, I understand an outside voice/observer can be helpful. My client load is trauma heavy (whose isn't?!) and my 84 year old mother lives with me. She is pretty independent but the two combined can feel pretty stressful some days and I know I carry that stress in my body. I have thought about a sleep study but none of my docs have recommended one. Maybe because I have had them tied up in this diagnostic nightmare for over a year! :-p
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1 ReactionI just see this message. I have neurological issues as well
my xrays show significant arthritis, my doctor is surprised i haven't broken my hip. i have a first meet up with a referred orthopedic doctor in 12 days. i live in a ski town, so, there is an excellent orthopedic medicine institute here who handle injuries on the world class ski slopes. i am on gabapentin 300 and dueoxitin 20 to increase to 40 next week and ozempic (need to lose 50 lbs). i use a walker in the house and sometimes when i go out. i hope to grab a grocery cart not a scooter.