[draggenangel]

Hi I am new to this site and not sure if im doing this right.I never been on a support site and actually joined.Nobody understands the pain or what I go through everyday it seems that is more painful not having anyone to talk about it with.So when i came across this site I said to myself why not try it out.

So hear goes me,I am 35yrs old and 5 in half yrs ago I fell down the stairs.I hurt my left ankle.It was huge,painful, burning basically the worst pain I felt in my life!I could not stand on it.I couldnt walk for a yr.Was going back and forth to different doctors.one would say it was broke another it was srung ,put a cast on take it off back and forth......Finally a bone specialist so me and right away diagnosed me with rsd.Finally somebody knew what was wrong!!
So then he sent me to the pain clinic.The pain dr.also diagnosed me with fibromalgia.He said that they usually go hand in hand. He gave me a pain shot in my spine.That did not help so a week later they gave me another one.I was finally able to stand on my foot!!!

Of course I had to go through physical thearapy for 6 months to learn how to walk again. Throughout the yrs.my foot of course still tightens and tingles and burns at times.Worse if I do certain things.But I can walk thank God!!

Anyways I know this is super long I do apologize.But if anyone does read this pleas continue to read because I have some questions and I was hoping that somebody could help me.I suffer from headaches especially migraines.The past yr has been worse.I had a migraine for 12 straight days it was horrible!and also my neck has been hurting really bad.The past yr I also am so sensitve to sound and light.It causes so my pain in my neck and head and the back of my eyes.It feels like shooting pains through my neck like strings being pulled different ways.
The light feels like it shoots right through my brain.The the doctors gave me catscan ,mri blood tests and they dont see nothing.I keep asking them could it be the fibromalgia or could the rsd moved to my neck or something.No real answers they just keep giving diff meds nothing seems to help.Nothing takes these headaches away.although somtimes the heating pad helps the shooting pains in my neck if I catch them in the beginning.
And how am I supposed to know if med is helping when they give me diff ones at a time?The pain dr that treated me 5 yrs ago no longer is at the hospital.I dont know what to do.It seems like none of the doctors understand fibro or rsd not even the nero I see.Can the rsd move to ur neck or head after 5 yrs??Or Is it a symthom of fibro??and are headaches and pain around eyes a symthom??
Please any advice would be helpful!Thank you

[Abbie]

Hello draggenangel and welcome to NeuroTalk!

I have had RSD for 8+ years but only developed fibromyalgia in the past 2 yrs. My RSD continues to spread in some fashion very frequently.

The latest thing I have noticed is the back part of my tongue is on fire but cold or hot kill!!! Make the pain increase 10 fold!!!

I have officially been diagnosed with RSD from head to toe.

Like you, my pain management doctor for the past 3 years has closed his practice.....the whole pain clinic closed and the doctors are no longer listed on the Hospital's site as practicing medicine there. (I guess they all went poof!!! Gone!!!)

I called my primary care doc and am awaiting referral to a new doctor.

I sincerely wish you the best!! As you know this RSD MONSTER is different for all of us!! No two of us have the same symptoms nor react the same to the same medicines or treatments.

BUT PLEASE keep talking!! With help from everyone here you just might come up with a treatment that works for you.

Gentle hugs,
Abbie

[Kimmidwife]

Hi, I too have fibro and RSD I had fibro first and then got RSD after surgery. My RSD spread from my right wrist to my right ankle after I fell on the ice. Life is very painful. I can no longer work, have not worked in over a year. I have to walk with a cane and my ability to walk is limited. I am a doer and I hate not being able to do all the things I used to do. I used to love to walk and bike and roller blade. I can't do any of those anymore. All of this makes me depressed and down in the dumps a lot of the time. I try to put on a good face to my family but it is hard.

[draggenangel]

Originally Posted by Abbie

Hello draggenangel and welcome to NeuroTalk!

I have had RSD for 8+ years but only developed fibromyalgia in the past 2 yrs. My RSD continues to spread in some fashion very frequently.

The latest thing I have noticed is the back part of my tongue is on fire but cold or hot kill!!! Make the pain increase 10 fold!!!

I have officially been diagnosed with RSD from head to toe.

Like you, my pain management doctor for the past 3 years has closed his practice.....the whole pain clinic closed and the doctors are no longer listed on the Hospital's site as practicing medicine there. (I guess they all went poof!!! Gone!!!)

I called my primary care doc and am awaiting referral to a new doctor.

I sincerely wish you the best!! As you know this RSD MONSTER is different for all of us!! No two of us have the same symptoms nor react the same to the same medicines or treatments.

BUT PLEASE keep talking!! With help from everyone here you just might come up with a treatment that works for you.

Gentle hugs,
Abbie

I dont know if this is where I reply!!Lol The summer used to not bother me but this summer we had very hot start and I had to stay in bed in bikini for 3 days cause my back felt like I was on fire if any clothing touched it and moving around made it worse.And the sun oh man goes right through my eyes!So depressing cause rather have summer.Just dont understand because when I put heating pad on neck it seems to feel better.And when its cold or raining the shooting pains in my neck start to go crazy!Again how do I know which is which the rsd or the fibro causing it?So confused and lost...

[Abbie]

Draggonangel....

As hard as it may be.... and it was a nightmare for me!!!! My physical therapist saidnthe best thing I could do to help desensitize myself to my clothing touching me was to keep wearing the same clothes I would normally wear. For me, this worked. I'm not saying this doesn't hurt because it still does but I believe less than it would had I given in and wore less clothing or stayed in bed.

As for telling the difference between RSD & Fibro.... for me fibro makes me feel bruised all over. While RSD burns with the softest of touch, my bones feel as if they are going to explode, I cannot stand temperatures below 72° fairenheit or above 77° fairenheit. Between these temps is my comfort zone.

Hopefully there will be others who will come along who have both RSD & Fibro who came explain the differences in their symptoms.

I know it's confusing and frustrating.... but please know RSD & Fibro are 2 different "conditions" but are often treated with the same medicines.

I wish you the best...
Abbie

This is the first time I have read anywhere of a connection between fibromalgia and RSD.
Normally RSd leads to osteoporosis. Migrane and clusters headaches are one of the many secondary symptoms. RSD spreads in 77% of use and there is no commonality in the way it spreads or timeline. My first spread was caused by the use of a sensitivity pin 4ins outside what was thought to be the affected area causing it to go from hand upto elbow. Something the specialist had not seen before in 20 years of treating RSD sufferers meaning I am ultra-hypersensitive. The second by my grandson who when I started to walk trod on my toes with his boots oon so I now have it in both legs.
In 10% of use it will go full body, all 4 limbs, neck, head, eyes, teeth and internal organs.
I am also on of the 7-8% whose wounds may never heal.

[lolo217]

hello kevscar, i too have fibro and rsd in rt wrist after breaking my ulnar and radius bone, i have been waiting 2 months to just see the surgeon on the 24th. im so sorry to hear that you have it all over, really scared, think its on my rt side of face! may i ask how it all began? the burning i noticed after they casted me a second time as i out grew the 1st one, i think it was too tight cuz they ended up splitting it as my hand turned purple also, wondering if other people had this happen??

Started during op forCarpal Tunnel when local didn't work, felt every cut but kept my mouth shut and didn't give a sign the fourth cut pain was so bad I jerked up and only my head and toes were touching the table. Left hand clenched into fist and shot up into the air. right must have tried to do the same and broke against the clamp, both surgeon and 50 visits to hand therapiasts didn't see it. RSd real bad within 8 hours.