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Signs of Flare?

Jun 15, 2015 3:21 AM

I keep thinking about what visible signs there are for me before a flare, and was wondering if other people have similar experience.
When I move my limbs, my veins tend to move some usually but right before intense pain they will pop up half an inch or so.
I also get a chest ache before a full body flare, then muscle spasms and tremors. After that, I can't keep track anymore.
What are signs of a flare for you?

Jun 15, 2015 8:05 AM

It's good that you notice symptoms beforehand. Unfortunately for me I don't pay attention until I'm already in its grasp. 🙏🌼

Jun 17, 2015 8:19 PM

It's spasms on my lower back with a hint of tiredness that I feel before I get a flare up. But when it does come I can't do anything lol. My doctor don't believe in muscle relaxants. So I just sit and wait till it hits me hard basically. Lol not sure how u can avoid it but just how you deal with it.

Jun 18, 2015 6:01 AM

I wish I knew when my EDS was going to flare. Instead, I can just be fine one minute, and on the ground whimpering in pain the next. :/

Jun 18, 2015 10:24 AM

Octobot, that's awful that the doc won't give you muscle relaxers! That's what helps most with the tightened muscles. What a shame! Could you get another doc to write a prescription for one? 🙏🌼

Jun 20, 2015 4:49 PM

Nope small community with limited doctors. Initially when I hurt my back, I've been given only days worth of valiums and a weeks worth of pain killers like panadene forte, no other opiods. So every week I would see the doctors twice. I've only been diagnosed with chronic pain after I went to pay for a MRI on my own. That was about 3 months later when I was on holiday.

Since then, the doctors here gave me nothing but constant panadene forte and sent me home. I feel that in this hospital, only one here, has labeled me an abuser. So basically for the last couple of years, I get nothing from our local GP, only a few good GPs would give me something more than opiods. I've been living like this for much too long and there's just the one doctor whom has settled here which has caused me the grief with new doctors even. This new recent doctor I had was really good, but she left after 5 weeks of service here.

Jun 20, 2015 6:53 PM

I'm so sorry Octobot. My sister ran into similar lack of care when she lived in a very small town. She's moved to one a little bigger and its not much better, but she can drive in 3 directions close by to have quick good care. We lived in the country until 13+ the ago, and now I'm a small city girl. The benefits to chronically sick is worth the traffic. I don't ever want to go to a big city though. Is it possessible for you to drive somewhere else? I'll keep you in my prayers. 🙏🌼

Jun 20, 2015 10:37 PM

It's awful that the one Dr has caused you to be treated as a drug abuser, if they only understood chronic pain, they wouldn't feel that way. Will be praying for you.

Jun 23, 2015 2:34 AM

I'm surrounded by sea, so no option to go anywhere else lol...planning to have a good talk to the doctors one day....will try to give them a piece of mind. I'm working with a pain specialist at the moment, awaiting to see whether they can diagnose me over Skype or something lol. They can fax my mess to my local pharmisit if needs be.

Jun 23, 2015 12:47 PM

I'm jealous Octobot... 😉 I dream of living near the ocean. 🙏🌼

Jun 25, 2015 12:35 PM

I'm no longer allowed to call ambulances in acute episodes (10/10 pain +muscle spasms) becauseat one point I had to call them every day/every other day and a paramedic/EMT decided I was "Addicted" to Entonox (Gas & Air) because I was sucking it in like anything during my actual spasms (they're intermittent, about every 60 secs and that's when the pain goes past even 10 so that's why I took lots of gas and air) even though during my 60 seconds between spasms I took it normally after a few seconds. The reason we called ambulances is because of the pain and as I cannot breathe properly in the acute episodes, Sometimes my breathing is so bad that I can't see etc. Because my SpO2 (oxygen in blood) is 80 when it should be above 95 (to not be dangerous) and 99-100 to be perfect

Jun 26, 2015 10:23 AM

Wow! I'm so sorry you've been denied ambulances TiredInPainAndInsane. At the least your doctors should provide you with oxygen at home for emergencies. 🙏🌼

Jun 27, 2015 1:49 AM

My leg muscles get so tigh. They hurt really bad

Jun 27, 2015 7:09 AM

I'm sorry for Your tight leg muscles countrygal I'm praying for you

Jun 27, 2015 7:46 AM


I've been trying to guess where you are... :) anyway... There are a couple of apps at least here in the US which are supposed to provide medical service. I'm not sure how advanced the service is--but I'm pretty sure the doctors involved are physicians. And I believe it's the kind of thing where you can build a relationship with someone. I don't think it's intended for spcialists, but I'll bet there are specialists--or at least helpful people.

And re oxygen--at one point, I had been wondering about oxygen treatment for migraines. I thought oxygen could be prescribed for people with specific medical problems. I'm not sure if you're talking about oxygen or something like ether (although that would make you pass out).

Jun 27, 2015 8:30 AM

At one point I asked for ox then flappy. They said "It's an unnecessary fire risk" even though I have gone into shock several times from my episodes. They have also denied me any pain meds for acute episodes except up to 400mg of gabapentin (neurontin). This means they leave me in 10/10 pain for up to 6.5 hours.

Jun 27, 2015 6:03 PM

Starrynight - I'm from a very small community, on an island ....🙈 we are so deprived of medical services here.

Jun 28, 2015 9:27 PM

I have no warning. It hits me full on. I even have slight swelling in my most painful affected area.

Jun 28, 2015 9:36 PM

Countrygal, rub some voltaren gel into the muscles, (rx). If you don't have it use an otc ointment.

Jun 28, 2015 10:24 PM

I wish I had warning signs.

Jun 28, 2015 10:30 PM

I dont normally have warning signs either. I just start hurting really bad and it escalates and stays that way for a few days and then settles down

Jun 28, 2015 11:17 PM

I don't have any warning signs either. It gradually starts hurting and the like Alwayz it gets to a point when I have to take either my Hyrocodone / Acetaminophen 325 / 7.5 every 6 hrs.,or Oct rubs and roll on's.

Jun 30, 2015 9:30 PM

I get chest pain like I'm going to have a panic attack...and I get a really bad headache....then from there I loose track..hope this helps...

Jun 30, 2015 11:07 PM

I usually get a flash of chills and my joints stiffen and then the pain radiates from there. Sometimes if I'm lucky I can catch it in time by going to bed and bundling up. I notice if I get TOO cold or TOO tired combined with barometer changes it's game over

Jul 01, 2015 6:10 AM

Sweetiepie, that's interesting. I get cold sometimes but just ignore them. I'll have to pay more attention to them next time to see if that's happening to me. Have a blessed day everyone! 🙏🌼

Jul 01, 2015 4:01 PM

I do have signs of flares, but it's usually just a minute before so I can't really do anything except grab some meds and lie down.

Jul 28, 2015 10:32 PM

My only indicators of flare up is weather changes and if I overdo it. Otherwise they hit me out of the blue.

Aug 03, 2015 1:45 AM

I get cold too but the flare up comes on quick and blindsides me. Walking 6 blks can take me up to 25 min. then I'm toast pretty much if I don't get the ice packs, some otc analgesic creme, and a Norco. That's with the Butrans 10 mg patch on.

Aug 04, 2015 9:29 PM

im new to this so i dnt get any signs it just hits me full force n when that happens my meds dnt even touch the pain i feel nor does the masages

Aug 05, 2015 1:12 AM

Venus, when I first dealt with flares I had no idea what was happening. I would be fine, then sobbing and what I call "floating" because I'm never sure if I exist or am just looking at myself. Meds didn't help until I really massively experimented and got extremely desperate. I stopped listening to most doctors, a and started getting better. There might never be an affordable "cure" but usually something exists to make surviving a bit more bearable.

Aug 05, 2015 9:37 AM

Sometimes I can tell when my neck and eyes start to be to sinsitive I know I have to go and sit up in bed to hopefully calm the rest of my nerves before I start getting sick. If I don't catch it then that's when the rest just flies sick in bed for two days and ya that is all for now

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