Please help ! Numbness hands, feet!

Posted by mellie88 @mellie88, Aug 17, 2023

Hello. I am having a time getting answers. First off, I have fibromyalgia and I’m being told that my symptoms are indeed fibromyalgia but I don’t believe it. My hands and feet feel tingly and numb almost all of the time with them falling asleep many times per week. When I touch metal or dishes they feel colder than they should. I am also coughing like I’m allergic to something (?) Doc says lungs are clear. I break out in a rash on my face and chest sometimes as well. Along with all of this I feel weak and my muscles feel strained. I can barely work out like I normally do. Doc says I’m as strong as ever. I have aches and pains but the pain doesn’t feel like fibromyalgia. I’ll get up and it feels like my blood is rushing to my legs. Doc says pulse in legs are fine. She said the last couple of times I had Reynauds but she hasn’t brought it up again. My hands don’t seem white or purple but red mottled? I’ve had a bunch of bloodwork done many times the last couple of months and all seems normal except a couple of days ago , one MCHC (platelets?). It was borderline low 31.4 and was 33 in June. Also my glucose was 66 a couple of days ago and 99 in June. ANA normal. Liver enzymes normal. Everything normal except the two mentioned above. I was put on prednisone but it didn’t do anything. I don’t have a nerve conduction test until 10/31. Docs (rheumatologist) and primary care don’t seem particularly concerned but I’m so stressed out and scared by this. I can’t go to the hospital again because we’re still paying off a visit from June (other issue) . I’m a 55 year old female by the way and in shape. Or was in shape. Please help.

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@mellie88 So sorry to hear about all of your issues. So frustrating when doctors don't have answers or show much concern. Negative tests don't resolve your suffering. Your issues do seem to have an autoimmune vibe to them. I'm just throwing something out there for you to read up on and see if it fits at all -- research scleroderma CREST symptoms. Your ANA is normal though, but you never know. Some bodies are more sensitive to minor changes than others. Just hoping to help you with questions for your doctor.

Your nerve test results will be interesting. My son and I both used to get random swelling in our hands and feet that appeared as red mottled as you mentioned. It caused instant painful itching and could be relieved through elevation (try holding arms straight up for a few minutes). We both have hereditary neuropathy with pressure palsies (genetic and rare). My son and I also both get muscle weakness (muscle fatigue really) that comes and goes. I even have it in my chewing/swallowing muscles making it challenging to eat most things without aspirating or getting food stuck in my throat. Your other issues don't match ours, just stating those issues are neurological for us. Your muscle weakness also makes me think of myasthenia gravis, but again, the other symptoms don't match up. I hope you get some concrete answers and relief soon.

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@californiazebra

@mellie88 So sorry to hear about all of your issues. So frustrating when doctors don't have answers or show much concern. Negative tests don't resolve your suffering. Your issues do seem to have an autoimmune vibe to them. I'm just throwing something out there for you to read up on and see if it fits at all -- research scleroderma CREST symptoms. Your ANA is normal though, but you never know. Some bodies are more sensitive to minor changes than others. Just hoping to help you with questions for your doctor.

Your nerve test results will be interesting. My son and I both used to get random swelling in our hands and feet that appeared as red mottled as you mentioned. It caused instant painful itching and could be relieved through elevation (try holding arms straight up for a few minutes). We both have hereditary neuropathy with pressure palsies (genetic and rare). My son and I also both get muscle weakness (muscle fatigue really) that comes and goes. I even have it in my chewing/swallowing muscles making it challenging to eat most things without aspirating or getting food stuck in my throat. Your other issues don't match ours, just stating those issues are neurological for us. Your muscle weakness also makes me think of myasthenia gravis, but again, the other symptoms don't match up. I hope you get some concrete answers and relief soon.

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I was wondering about Scleroderma and also Sjogrens (my dad has it). I’m also wondering about Guillain- Barre because I was in the hospital at the end of June and I’m wondering if I picked up a virus. I swear I’m getting worse, too. Thank you so much for caring. I truly appreciate it.

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I’m not going through exactly as you but I’ve gone through 82 breast chemo treatments with NO tingling. However 3 weeks ago, cancer moved to brain, 12 spots, and I just finished 10 rounds of brain radiation to whole brain, now I have tingling in finger tips occasionally but my hand does have spasms occasionally. My glucose went from 96 to 130 pretty much overnight and my potassium levels dropped from low, with in levels to just below, overnight. I wonder if the glucose and potassium have anything to do with it? I do take a good, 3rd party tested, potassium supplement and I don’t eat bad glucose but a lot of fruit which shouldn’t effect it because I’ve done the good eating for 3 years. Maybe up potassium, first through Whole Foods and then upping supplements? With chemo every 3 weeks, I get my blood work with each treatment and everything is in the normal range, except now?? Only a MRI will really show brain activity. I’ll keep researching and get with you on any findings. Do the same for me please! May God give you your much needed answers!

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@jpnnobx

I’m not going through exactly as you but I’ve gone through 82 breast chemo treatments with NO tingling. However 3 weeks ago, cancer moved to brain, 12 spots, and I just finished 10 rounds of brain radiation to whole brain, now I have tingling in finger tips occasionally but my hand does have spasms occasionally. My glucose went from 96 to 130 pretty much overnight and my potassium levels dropped from low, with in levels to just below, overnight. I wonder if the glucose and potassium have anything to do with it? I do take a good, 3rd party tested, potassium supplement and I don’t eat bad glucose but a lot of fruit which shouldn’t effect it because I’ve done the good eating for 3 years. Maybe up potassium, first through Whole Foods and then upping supplements? With chemo every 3 weeks, I get my blood work with each treatment and everything is in the normal range, except now?? Only a MRI will really show brain activity. I’ll keep researching and get with you on any findings. Do the same for me please! May God give you your much needed answers!

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Oh goodness. I’m so sorry you’re going through this. I had an MRI in June and it was normal. 🙁

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You seem to have symptoms consistent with dysautonomia and an autoimmune disorder like Sjogren's syndrome. You should find a competent neurologist who will try to rule out these conditions. I've dysautonomia, and I guess that all cases are different, but foods can trigger a an attack. In my case, I can't eat chocolate.

An attack constitutes misfiring of your autonomic nervous system, which controls your bodily functions from sweating and tear lubrication to gastric and intestinal motility. Research the autonomic nervous system and its 2 parts--the parasympathetic and sympathetic nervous systems.

Sjogren's is a syndrome indicative of an autoimmune attack on glands, but may also be extra-glandular, which can be more serious. Some of the symptoms, esp of the glandular type of Sjogren's, can resemble the symptoms of dysautonomia.

First thing, assuming you're medically stable, keep a log of foods and symptoms. That might help.

Good luck.

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Thank you so much!!! I bet Sjogrens has a lot to do with this and will look into the dysautonomia. Ty Ty

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@jpnnobx

I’m not going through exactly as you but I’ve gone through 82 breast chemo treatments with NO tingling. However 3 weeks ago, cancer moved to brain, 12 spots, and I just finished 10 rounds of brain radiation to whole brain, now I have tingling in finger tips occasionally but my hand does have spasms occasionally. My glucose went from 96 to 130 pretty much overnight and my potassium levels dropped from low, with in levels to just below, overnight. I wonder if the glucose and potassium have anything to do with it? I do take a good, 3rd party tested, potassium supplement and I don’t eat bad glucose but a lot of fruit which shouldn’t effect it because I’ve done the good eating for 3 years. Maybe up potassium, first through Whole Foods and then upping supplements? With chemo every 3 weeks, I get my blood work with each treatment and everything is in the normal range, except now?? Only a MRI will really show brain activity. I’ll keep researching and get with you on any findings. Do the same for me please! May God give you your much needed answers!

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Have you told your doctor about the potassium supplement? Have you had your kidney function tested? If you are older, older adults often have at least mild renal insufficiency, in which case, the potassium supplements can be harmful.

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I’m not on any potassium supplement right now.

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@pacer3702

Have you told your doctor about the potassium supplement? Have you had your kidney function tested? If you are older, older adults often have at least mild renal insufficiency, in which case, the potassium supplements can be harmful.

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No I haven't told my Dr about potassium supplement but I'm heading to Mayo Clinic nezt week and I updated my portal. As far as kidney function, just bloodwork

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I don't know if this will be of any help, but I had the tingling/numbness in my feet and through a lot of research added some supplements to my daily regimen. They are: Magnesium L-Threonate, Liposomal Vitamin C, Vitamin B Complex and Methyl Folate. They really did work for me. I hope you find solutions soon.

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