HealingWell
Search Close Search
☰

Strange symptoms. Anyone relate?

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/7/2015 6:19 PM (GMT 0)
I was told my my pcp that I have fibro. But my naturopathic dr thinks otherwise and is looking at a metabolic and dna test I did to try to figure it out. They think it's to do with my connective tissue (tendons, ligaments) and undernourished blood.

But the symptoms I have, anyone have these? Even if I do not have fibro, I feel something is inflamed and that it's possibly still neurological. I'm on Neurontin now and it helps with pain i think.

*hot hands; last night they had the sensation of feeling just...hot. Was keeping me awake. I had to keep them outside the covers where my fan could get to them.

*cold pricklies; the sensation of not intense, but not light, cold prickly pricks on your skin. I had them on my legs last night. Again, keeping me awake.

*pain--what felt like pretty much all over--felt like it was in my bones. Ankles, toes, shins, hip bones, wrists, shoulders, elbows.

*(may or may not be related) electric shock feeling. I have it in my foot, tho I have issues with that foot already. But the shock is intense.

*smaller pin pricks, slightly shocky, on skin, various places. Not a conglomeration of pins/needles--just a single prick, that varies in location.

The search feature here, from what I can figure, cannot be limited to one forum. So I was unable to search for these things in just this forum. So forgive me if all this has been posted already.

Thanks. Just looking for a friend(s) with something like I have, as I feel alone in this. My mom recently passed and I can't talk to her about it, as I always did.
sad sad
Posted 6/7/2015 7:11 PM (GMT 0)
These all sound a lot like fibro symptoms..i have a lot of fatigue with mine...and less of the hot and cold.

Occassionally i wil feel like i am getting stung by bees...but i am not

This is a great forum , lots of good people.. And a great place to talk through your feeling...

There are of course other things that mimick fibro.. So its sometimes hard to tell..

Welcome to the forum, ask any questions you need to
Posted 6/7/2015 9:02 PM (GMT 0)
You rock! Thank you. Yes, even vitamin deficiencies can cause the neuro issues. I think the ND will check my Thiamine levels when I go back this week.
I was told my my primary that I dont have anything 'serious' after doing bloodwork.

I have anxiety in general, not really now perse. And was diagnosed with depression/panic as a teen. Been on Xanax and Prozac ever since, more or less-now very low doses. I dont think this is anxiety. When I was very anxious long ago, I had some of the hot hands and I think pricklies, but I def. WAS anxious.
This is not that.
Posted 6/7/2015 9:22 PM (GMT 0)
Definitely sounds like Fibro and I have all of those at different times. Gabapentin has helped with the electric shock feelings. I alternate betweet either frozen/blue/painful hands and feet (feet are worse) and HOT, burning, red & swollen hands and feet. This wakes me up a lot (the hot, burning)!

That doesn't mean it can't be something else, just doesn't mean it isn't Fibro.
Posted 6/8/2015 1:06 AM (GMT 0)
I get hot hands a lot. Mine is from RA.

Do you feel a faint popping or crackling in your hands?
Posted 6/8/2015 2:42 AM (GMT 0)
God that sounds terrible! How do you deal w/the hot or cold crap? Or how do you make it go away?

I was supposedly tested for RA and I don't have it.
Posted 6/8/2015 3:24 AM (GMT 0)
Ice when hot and heat when cold. I don't get cold very often.

My joints are often hot and tender.
Posted 6/8/2015 3:37 AM (GMT 0)
I'm so sorry for the loss of your Mom phixxgirl my mom and dad are both gone and so often I wish I could discuss things with thm that I go through with the fibro. Feel free to message me. I hope you figure out what it is.
Posted 6/8/2015 4:49 PM (GMT 0)
I m guessing they checked your vitamin d levels? I had crazy effects from low vit d.. Which made the fibro seem so much worse.

We can have neuro inflammmation that does not show in our bloodwork, still we feel it! My dr had me up my omega 3's ..but that needs to be a good quality product , or you can get after taste that is bad..
Posted 6/8/2015 6:39 PM (GMT 0)
I don't get crackling in my hands no.
Well I'll have a cold rag near my bed I guess.
Oh and I got a new symptom (tho maybe totally unrelated)--my lower stomach muscles are twitching!

Losing a parent just sucks. I miss her a lot. She was my best friend.

Most likely yes, though I'm on 5000 iu of vit d. I read magnesium deficiency can cause the tingling or prick sensations. Also too little or too much of vit b12 or thiamine.

Well the type of pain supposedly from the connective tissues, and undernourished blood, I was told would not show up in current blood testing.
I am on a good fish oil, 3g/day, given by my ND. It's not available in the stores, though possibly amazon.
Posted 6/8/2015 10:51 PM (GMT 0)
Yes i am sure you miss her terribly, i am so sorry for your loss..

With fibro, i get about half my help from drs... And about half from self help..i do get a gentle therapy from time to time..its a gentle manipulative form of physical therapy.

I am having ot now for june..it helps

Topical pain relievers are a big help to me, since i cannot tolerate a ton of meds.
Using heat helps

You can look up acupressure points for specific pains that can be very helpful!

With lots of aches and pains we need a fibro toolbox : )
Posted 6/8/2015 11:10 PM (GMT 0)
I'm so sorry for the loss of you mom. I'm sure you have been under a lot of stress and going through the grieving process, and both of these can exacerbate fibro symptoms.

I get pin prick sensations in my feet frequently, and I have a lot of muscle twitches all over, especially if I'm stressed or fatigued. I've had a bit of a rough year physically and emotionally, and my pain is probably at an all time high. Everything hurts pretty much most of the time right now. There are days when it seems like the only thing that doesn't hurt is my hair.

Fibro can cause lots of weird sensations. In addition to twitches, pain, pinpricks, and shocks, some people will feel like something is crawling on them or like someone poured hot/cold water on an area of their skin.

Hang in there phixgrrl. I lost my mom several years ago, and I know it must be such a difficult time for you. I hope you join us here frequently. This is a great place for support.

(((Hugs)))- Austen
Posted 6/9/2015 1:46 AM (GMT 0)
Very well said Austen!

It is a great forum : )
Posted 6/9/2015 2:18 AM (GMT 0)
Hello Everyone,

I am very sorry about the loss of your mom, I lost my lil brother 2 months to Diabetes he was only 25 yrs old. Yes I also have those weird symptoms, dx w/ FM 3 yrs ago, Anemia, Vit. D deficiency. But in the past couple of days i have noticed severe jaw pain and severe headaches on the left side only. This had me a little worry because it was on the left side only....
Posted 6/9/2015 3:24 AM (GMT 0)
I looked around once for why feet get so hot. This was the best conversation I came across. Seems like even people without fibro are bothered.
http://forums.whirlpool.net.au/archive/2058942

What I gather from our forums is that all of the weird sensations seem to boil down to either RestlessLeg syndrome's odd assortment of feelings and movements at night,and then if it happens more than just when you are tired, then it may help you to know that neuropathies are common in fibro.

That doesn't mean there is no hope for solutions for neuropathies, but there are probably varied causes. It's not something I have read a lot about, tho . If you study up on them, let every one know what you find? I'm going to guess vitamin deficiencies for some people. Maybe all of the digestion problems in some fibro patients create malabsorbtion/deficiency. Some diabetics get neuropathies, and hypothyroid patients, too.So maybe there is something related to your metabolism. I'm just guessing, but I see a lot of hypothyroid patients on our forums.

Good luck. I also sometimes have my feet out from under sheets and in the cooler air. An under-the-blanket fan sounds nice.I may want to see what it costs.
Posted 6/9/2015 3:28 AM (GMT 0)
The good thing is that with my Naturopathic doc (ND) they are open to research and have some different tests than a MD. They say they like that I'm proactive w/looking things up. I don't know how one CAN'T when you have something that no one can really diagnose.

I do get tissue massage from my chiro, but it's more b/c my neck and shoulders are very tight, pretty much all the time. And have been since I've been aware of them--around after high school.

I use heat on painful parts too. But can only really put the heating pad one one area at a time.

I get accupuncture--is that the same as accupressure? Ive had it 3 times recently. Again on Wed, though this will be the first time having it since having these pin pricks, hot hands and cold pricklies. I have what feels like nerve ending pains on fingers and toes. Cold pricklies in my back, neck...wherever. My ND did say that gabapentin, like others in its class, affects gaba and can also affect other neurotransmitters-possibly accounting for the prick feelings. But she wanted to do more research.

The shocks were bad. I could probably only deal w/them intermittantly.

My mom was diabetic. It's so terrible (or can be). She had terrible Allodynia--though that wasn't written down as a diagnosis but I actually learned the term yesterday. Her legs were untouchable. I just learned fibro patients can have it too, so I'm really freaked out. She had many things wrong with her, in one way or another stemming from the diabetes. And I thought if I end up that way, I'll just off myself. She would cry to me she wanted to die but didn't want to leave her kids (me and my bro).
So of course reading about the Allodynia is adding to my already high anxiety. I had thought it was exclusive to diabetics.

I was dx'd with IBS as a kid. High school came and I got depression and panic disorder. I'm finding out those 2 often can happen near each other. And from another post here, healing the gut can help heal fibro (maybe).

And I feel I'm getting stupider...I can't remember things.

Post Edited (phixgrrrl) : 6/9/2015 12:36:38 PM (GMT-6)

Posted 6/9/2015 1:56 PM (GMT 0)
So sorry for the loss of your Mom. That must be really tough not to have her there. I know we are not a substitute for her, but hopefully you will find some helpful advice and comfort and caring here.

I hope I don't offend anyone with this, but sometimes I read about others who have lots parents, whether recent or long ago, and it reminds me to appreciate my parents more. Sometimes I am not the nicest daughter and I do not want lots of regrets when someday they do pass.

Back to fibro…my doc had ruled out other things based on what seemed like a million blood tests, but he never did the trigger point testing. I am on Lyrica and it helps SO much. I had a new rheumy who said it was likely neuropathic pain with some fibro mixed in. Weird, but as long as the meds help, I won't complain.

Have you looked at the page at the top that tells all about fibromyalgia? One part lists common symptoms and it really helped me to identify things and sort of feel better….like "Oh, I have this symptom, and now that i see it's part of fibro, it really explains a lot. It's not just a random thing"

Hope you keep coming back and don't be afraid to ask questions or share experiences, that's what this is here for. Good luck!!
Posted 6/10/2015 4:14 AM (GMT 0)
I've most always been a night owl. I like the night (usually) and staying up. So now trying to get to bed earlier, around 1230. But it takes a while to fall asleep, even before any of these symptoms.

Yes I have read about fibro folks having underactive thyroid. Last I had mine checked it was normal.

I have some type of leg thing...I dunno if its RLS tho. And it occurred way before these symptoms. It's like I have to move them, but that's it. And I do move them. Sometimes change positions.

Ive had more than normal digestion issues since a bit before the "fibro" symptoms.

I read on another forum that some people (tho the drug co's say its rare) have neuropathic symptoms from SSRIs, either right when they start, after years of being on them, and/or when they get off them. I've been on Prozac for over 20 yrs.

Also from reading about the 'fog' thing, most reasons listed for it could happen totally outside fibro, so I dont' understand why it's associated with it. Its like getting a rash from poison ivy, and then being told you have skin cancer. Huh??

What is trigger point testing?

I have seen the list of symptoms. Thing is, even if diagnosed w/fibro, it isn't a disease...its a list of symptoms that cannot be explained as far as a cause. Just that it's neurological. It doesn't make me feel much better.
My mom had neuropathy so bad in her feet that she couldn't feel much when she walked, but at the same time, her feet would hurt and you couldn't touch them. Maybe that's more a diabetic neuropathy, but I do NOT wanna end up like that, not being able to walk, or walking with that much pain.
✚ New Topic ✚ Reply