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katydid

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Hi my names Katie, I'm new to this so bare with me....

back in 2010 I was rear ended by a bad driver... I was on the highway going 65 and she was doing 85+.... TThat's when the pain in my neck, low back, and shoulder started... Then in 2011 I was rear ended again, this time I was at a dead stop waiting to turn left and a young boy hit me doing 40... Totaled my car, there was no more back seat, and my drivers seat broke... Absolutely terrifying... That second accident made my current pains worse and also created new pains that radiate down both legs and arms...

Over the last few years I've seen many Dr's. Some believe me, some don't, some say they can help and some say they can't... I can't seem to get the right medical attention anywhere.... And I'm just about ready to give up because it's exhausting trying g to find help. Maybe it might just be easier if I pretend I'm fine? Oh wait I already try to do that on a daily basis so people don't think I'm a cry baby. Inside I'm dying......

I just started seeing a new pain management Dr a couple months ago, I'm not sure how I feel about her yet..However she seems better than the last one who almost landed me in the hospital for over use of opiates... Stupid Dr- she was a quack.
Anyways ialso have an appointment I've been waiting for for a few months already for a rheumatologist.... I've heard you really don't get help until you see that type of Dr for some reason..

I was wondering if anyone has any similar stories or advice for me.... I'm desperate for help, advice, and even a friend who understand and what I'm going through..... I've lost so many friends over the last few years... Guess you don't know who your real friends are until something happens.....

Anyways...

I'm experiencing neck pain from bulging and herniated disc's, they also tell me I still have whiplash because I was hit so badly twice with no real healing time..

I have minor bulges and degenerating disc's in my lower back....

I have/had (it healed separated because they didn't catch it until 3 months after the accident) a separated ac joint on my left shoulder from the seat belt...

I've got tingling in my finders and toes intermittently

Electric shocks in both hands and all Fingers intermittently. Sometimes I get the electric shocks in my legs...

My left leg hurts much worse than my right leg... To the point where I once asked my one Dr to amputate it but she wouldn't obviously.....

My Muscles ache so badly I can't move sometimes....

My back swells. It also gets very hot when I have moderate to severe pain... When it gets hot I develope a rash.... Kind of... My new Dr seems to think that I've burned myself with my heating pad, but this rash/ red pattern comes and goes when my skin gets hot from the pain.... I've actually laid off the heating pad not using it for almost a month now and I still get the red pattern when my skin is hot. And I'm not talking just hot or warm, but scalding hot... To the point that my boyfriend won't even lay next tome because I'm so hot it's uncomfortable.....

I have twitches and muscle spasms also....

I'm sure I'm missing stuff but that's the big pain problems.

FYI I've been researching fibro and associated health issues, I should inform your also have neuro cardio genic syncope, low blood pressure, and also a mass in my pituitary gland that gets monitored yearly. I mention this because I have read some things about something called Pots and also have read that cortisol levels can affect pain levels, and mine have been known to be slightly elevated...

My mother's family has a history of many autoimmune issues as well. And my mom has had RSD in her right foot for 15+ years from a drunk driver hitting her......



Does anybody have any advice for me or any words of wisdom?
I'm just feeling so alone lately and don't know what else to do...

If not, I at least thank you for taking the time to read my story......
 
Katie-opny
Welcome to the forum. I am glad to hear your going to a rheumatologist for some of your symptoms, but I hope you have also seen a neurologist, for other symptoms you are experiencing. I am going to offer a chance reason that your skin is getting very hot. It could be a allergic reaction to medication your using. I had a bad allergic reaction that made my skin inside and out, feel like it was on fire. The condition is called Steven-Johnson syndrome. You can look it up online. Some people get it worse than others, I did not end up in a burn unit but I was in pain for many months. Check each medication you take and see if the condition gets worse after taking a medication, then you will know for sure. Use cold cloths on your skin for relief. Most doctors do not even think of this condition and often do not know anything about it. Hormonal changes can cause feelings of being to hot, but that usually causes sweating, and not pain. Using fans can help mantain a cool breeze over your skin as well. This condition is a chemical burn, from medication. It is worth looking up and asking your doctor before the condition becomes worse.

Whiplash can cause severe pain. Usually neurologists treat this type of condition because they deal with your spine as far as, nerve endings and could help with the pain. Pain management is an option, as well as, types of relaxation and stress management. I am hoping others on this site can give you some advice on what worked for them and how to deal with the symptoms. It might not be fibro for all your conditions. Good luck in finding more help through the new doctor. :)
 
I wish my back getting hot and red was from medication. I have been having this issue since the 2nd accident... And have not been on any of the same medications that long.
... The one dr thinks I burned myself with the heating pad but I don't think so... Due to I haven't used the heating pad for almost a month and the red pattern still comes and goes...

I had seen a neurologist last summer who was very helpful but crazy.... But she advised me I needed a pain management Dr because she was not willing to experiment with meds with me, she put me on a laval (amitriptiline) which was a horrible medication for me, after that didn't work she pushed me on to a pain management Dr.... And she also said I should possibly see a surgeon... Every surgeon I've seen says I'm not bad enough for surgery/ too young and they wouldn't want to do surgery.... I should mention I'm in my mid 20s...

The new pain management Dr is tip toeing around dfibrobut won't officially diagnose me and it worries me she's unsure about what's wrong.....
 
Hey Katie, I doubt what I can say can be helpful, but I certainly empathize with your situation. I am struggling to get a diagnosis myself, RA would be my primary complaint, probably a concurrent diagnosis of Fibro. Sorry to be blunt, but if you're losing friends over this, then they're not really friends. You use every resource at your disposal and keep fighting. Pretending that everything is fine (as you already said) doesn't work, your body will constantly remind you of that. I think I have tried desperately to try and convince myself that I am insane. Being out of touch with reality would be easier at this point. Unfortunately, a lot of doctors will make you feel insane, when it's just easier to throw you to the side because they want their paycheck and don't want to be bothered. I ask my mom "do you see this," in reference to my crooked fingers and rheumatoid nodules, because I'm seriously convinced I must be having hallucinations at this point. Sometimes, it's psychologically easier to convince yourself that you're fine, seeing things or just insane, especially when you can't wrap your head around the fact that you're going through so much and can't find adequate treatment. You keep fighting, even if you have to make up a reason, you just keep fighting the battle.
 
Believe it or not that is helpful because the Dr's do make me feel crazy and the pain makes me feel crazy.... And I know those people who don't care aren't friends it just sucks to feel so alone.... And then you feel more alone because it's that much harder to go out and make friends because you feel crazy and alone... Lol its a vicious cycle..
 
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