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Avatar universal

Muscle weakness, burning/freezing hands and feet

I'm a 23 year old woman of average weight. I've been struggling with muscle fatigue and weakness for the past 8 months. It's been gradually getting worse and more symptoms keep popping up, but nothing has really shown up in bloodwork.

I was diagnosed hypothyroid in 2010 and had two unsuccessful years on levothyroxine before switching to Armour. My dosage stayed pretty low but I felt considerably better than I did so I never pushed it. My grandma and aunt both have Hashimoto's but I have tested negative for it every time, although it has been a year or two since the last check. My mother has some kind of possibly autoimmune arthritis that they can't quite figure out yet, they suspect either rheumatoid or psoriatic but it's kind of up the air at this point. I also have a strong family history of diabetes.

I developed SIBO (small intestinal bacterial overgrowth) in 2013 and spent most of that year and part of 2014 increasingly ill before I was diagnosed and treated (two courses of rifaximin) in the spring/summer of 2014. I was doing much better healthwise and started biking. I did extremely well for a few months until the bike rides suddenly started getting more difficult despite the mileage and speed staying the same. I found myself struggling to keep pace and felt like I was trying to run through water. I tried eating and drinking more, taking more rest days, going slower and not as far...but it kept getting worse. I eventually had to quit altogether after I got tired half an hour out and barely made it home.

My iron levels were terrible so I was prescribed supplements, and I figured that was the cause of the mysterious weakness and I'd pick back up in six months or so. That was nearly 9 months ago. If anything, the weakness is worse now. Every kind of exercise I've tried since then has ended in a total burnout in a week or less, no matter how mild. My legs burn horribly walking up stairs and my arm feels heavy brushing my teeth. Lately I am often shaky and stiff feeling. Yesterday I went for a walk and today I am sore everywhere and exhausted. I don't understand it.

I've also developed flushing in my hands and feet, especially my feet. They've always been reactive to temperature but lately they turn bright red and puffy, the veins stick out and they feel hot and tingly with pins and needles at the drop of a hat. Afterward they usually ache a bit. If they're not flushing they're usually very, very cold but I've never seen a physical change with cold (unless you count people flinching away from my icy touch!) In the winter even if I was wearing gloves they would get extremely painful, like when you hold an ice cube for too long. I actually thought I had gotten frostbite a few times! I have also started getting buzzing and tingling, especially in my fingers and toes even when not flushed or frozen. My body temperature is always about 97.6-97.8 and I am nearly always cold. My blood pressure is usually hovering right above the limit for hypotension (generally about 90-95/60-65).

I have pretty much never been completely well and struggle with a lot of other mild health issues (IBS, rosacea, vulvodynia, asthma), severe anxiety and depression, insomnia and near-incapacitating brain fog. I also seem to have a bad sensitivity to the sun on my face and eyes. This could be the rosacea but it seems strange as it's not really that severe of a case. I was also diagnosed with fibromyalgia in 2013 but it mostly went away as the SIBO improved.

My iron levels are fine, ferritin is not quite up to par yet but definitely high enough that it should not be causing problems anymore. Cortisol, potassium, creatine kinase, crp, ana, glucose, vitamin d, c, b1 and b12, cbc panel, and folate have all been tested within normal range. Celiac, lupus and lyme tested negative in 2013. I take magnesium and vitamin D and have an extremely healthy diet (soy/gluten/lactose free, very limited processed food, lots of vegetables, lean proteins and omega 3s) to keep the IBS under control.

They bumped up my Armour in February and my thyroid levels improved a lot-
[last test: tsh - 0.56 (0.40-4)
free t3 - 1.9 (2.3 -4.2)
free t4 - 0.91 (0.76-1.46)].
My T3 is still too low and I'm working on getting someone to acknowledge that, but either way it's better than it was so if it's my thyroid why is the weakness so much worse now and why did it come on so suddenly last year? Why did it never bother me before when my levels were so much worse, even when untreated?

I feel like I've had a really bad downward spiral the last few weeks, everything is getting worse and I am honestly at the end of my rope. I would appreciate any thoughts!
2 Responses
Avatar universal
Definitely look into Lyme disease as a possibility! Many people suffer from it for a long time and don't even know it! It can cause all the symptoms that you're experiencing!

There's a great Lyme disease section on this forum! I suggest you check it out!  

This is another great site too!
www.truthaboutlymedisease. com
Avatar universal
I have a blood test schedule for Lyme, although I was tested a few years ago with negative results.

I have now randomly developed costochondritis (despite being fairly sedentary and not doing anything strenuous) and am having what looks like either a relapse of SIBO or a particularly bad flare up of IBS. I wish I knew why everything was suddenly going downhill at the same time, it's making it much more difficult to manage!

I also just got test results back that show I have extremely low progesterone and barely adequate estrogen so I am hoping treating that improves SOMETHING, anyway.
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