Hi there,

I just joined these forums because I'm in desperate need of a support system and looking to meet some non-judgmental individuals. My name is Natalie. I'll be 28 on December 9th of this year - just a couple weeks now. I live in Central California. I'm currently living at home with my parents on SSI/SSDI after try after try after try to keep up with the rigors of university and a 9-5 ...Just wasn't able to keep up physically.

I've dealt with Major Depression Recurrent, Generalized Anxiety Disorder, Panic Disorder and PTSD for most of my life. I have a neurological/biological condition where the synapses in my brain reuptake serotonin and other neurotransmitters. I was first put on Zoloft at age seven. My depression is completely generalized - I was never abused, molested or neglected - my parents have been great and supported me to the best of their ability from the day of the discovery. I made the complaint myself actually even though I was a little kid - I expressed childhood suicidal ideation. Within days of starting the Zoloft, I felt like I was feeling "normal" for the first time in my entire life. My lability spells stopped (crying for no reason; tearfulness), and my grades got better.

At age sixteen, I had crashed and burnt over and over again with multiple 5150s and voluntary admissions. I'd been on just about every med available so I opted for ECT. Yes, I was only sixteen, but it was ENTIRELY my idea... I researched it online and made an informed decision and I don't regret it at all.

At age twenty-three, I had maintainence ECT treatments. And then a couple years ago I was a research patient at UC Davis' FDA Approval trial for a TMS machine (transcranial magnetic stimulation). It helped a lot, was free and had no negative side-effects, but the improvement only lasted about six months.

Then in the last six months, I developed a physical syndrome. At first it started with me sleeping on my hand under my pillow and waking up with complete numbness from ring and pink up to my elbow. I was diagnosed with Cubital Tunnel Syndrome. Some odd things started happening though - the pain was excruciating and then my left arm started to mimic the problem in my right arm and hand and so I was diagnosed with Reflex Sympathetic Dystrophy Syndrome. I was also diagnosed with Fibromyalgia.

I have a sleep disorder in which I sleep preferably, between 14 and 18 hours. I wake up stiff. I never feel refreshed. Just taking a shower and raising my hands up to wash my hair tires me out for days - I have to recover from the smallest bits of exercise. I have tried an exercise regimen because I thought my lifestyle was just sedentary, but it just got worse. I did some research on RSDS and I just don't have pain that severe. The pain in my limb is due to a pinched nerve, not neuropathic pain. The intense pain in my body has no tender points, so I don't think the Fibromyalgia diagnosis I was given is correct either.

I'm not a physician, (although I am a licensed therapist and hypnotherapist) and so I decided to research Chronic Fatigue Syndrome - I spent hours and hours reading today and I think that is what's going on... I got Epstein-Barr Virus when I was fifteen years old. I NEVER recovered from the fatigue. I ended up going to an afternoon high school because I literally could not be woken up before 1pm, and I still have this problem (unless I stagger out of bed and take some Ritalin/CNS Stimulants to force my body to wake up - they are prescribed, but I don't like them). Recently I was living with some roommates who were seventeen and eighteen and they both came down with vicious cases of Epstein-Barr/mono. I found out that if I'd been having a flareup, my saliva would have been able to transfer it again. During this time I had a sore throat and then finally ended up in the hospital with pneumonia. I think I had one of those rare mono flareups and infected those kids - I feel really bad but I didn't know. When I had it, I was hospitalized and in critical condition at one point. I remained sick for 1.5 months, and after that, the Chronic Fatigue Syndrome just never left.

I'm pretty much bedridden with pain and sleepiness - sometimes I sleep 20 hours in one sitting. The correlated pain I've been suffering is also excruciating. I'm currently taking Morphine ER 30mg x2 (one at night, one in the morning), 75mg Nortriptyline (bedtime - for neuropathic pain), and Neurontin/Gabapentin 1200mg (take two 300mg increments with my first Morphine dose, and the other two 300mg capsules with my bedtime dose of Morphine). For mental health, I take 20mg Paxil, 4mg Xanax, 400mg Seroquel, and up to 80mg Ritalin PRN to help me wake up for appointments and chores and such. I know it sounds like a lot, but I can't shake the depression and suicidal ideation without my psych meds, and the pain is just too painful for an acceptable quality of life without the pain prescriptions ...Hence my screen name (2ManyProblems).

I just discontinued 4mg Ativan entirely (by taper of course), dropped from 600 to 400mg Seroquel, dropped from 100mg to 75mg Nortriptyline, and dropped from 4mg Xanax to 3mg, and eventually down to 2mg. I don't frequently take more than 20-40mg of Ritalin once or twice a week (I can't do the whole 80mg - it's just too much. At one point I couldn't wake without that though). I'm comfortable with my 1200mg Gabapentin, and 20mg Paxil. I just made the change to Paxil after Oleptro/Trazodone Extended Release pooped out on me and wasn't helping my depression anymore (I took it for eight months - built a tolerance).

So, I'm doing the best I can and hanging in there - really trying to make sure I don't wet brained from too many medications and trying to get down to just the bare necessities. My back hurts so bad though and I have shooting pain from my neck down my shoulder - just had an MRI on Saturday... We'll see what turns up.

I think the most difficult thing has been the loneliness... I joined a foundation called ** because I've lost so many friends due to this, and also some of them have gossiped that there's not actually anything wrong with me. It's pretty hurtful, but my mom bought me a shirt that says, "My disabling chronic illness is more real than your imaginary medical expertise" Lol! I love that shirt I just got a dog though and he's my new most beloved and "bestest" friend and my ailments have let up some just from having him around - he's 1/2 Chow and 1/2 Sharpei.

So anyway, I'm trying to figure out what my proper diagnosis is so I can explore what treatments are out there and hopefully be able to become more active again.

I am Greek Orthodox (which is like the Eastern Catholic Church if you're not familiar), and so I just pray a lot because I don't know what else to do. I'm glad these forums are here. Thank you so much for listening to my intro - I found the sub forums Medications & Treatments, Sleep Apnea & Sleep Disorders, Anxiety and OCD, Post Traumatic Stress Disorder, Chronic Pain, Fibromyalgia and Chronic Fatigue, Reflex Sympathetic Dystrophy, and Autoimmune Diseases.

Oh yeah, I forgot to add... A neurologist diagnosed me with Klein-Levin Syndrome, or, "sleeping beauty syndrome," but I also think this was a misdiagnosis. People with this tend to sleep in episodes of two weeks at a time - I sleep in episodes of 12-20 hours every single night, and I've never remained passed out for longer than that. I think they're just running out of ideas...

Thank you all for listening... This is just so tough to deal with!
Sending love and hope to everyone else out there,

--Natalie

P.S. The numbness, claw fingers, pins and needles, numbness, weakness, cold skin and paresthesia has cleared up in my right hand (the Cubital Tunnel issue), and I can finally hand write again for the first time in six months!!!

P.P.S. If you've had any experience with RSDS, Fibro, and ESPECIALLY CFS, please don't hesitate to post or PM

P.P.P.S. I hope I'm not breaking any rules - I live in California where medical marijuana is legal. I was considering getting my medical license, but I'm curious beforehand as to whether it helps with these types of neuropathic pain or not... I just feel out of options at this point in terms of pain medication. Medical MJ is about the only thing left now that I haven't tried. Thanks again.

Hello Natalie,

Welcome to the NeuroTalk Support Groups.

I'm sorry but I'm having internet problems so can only leave a brief message for now.

I'll leave the main index url where you can find particular forums that you think would suit.

Main index NeuroTalk
Forum Search Feature

There's also the forum search feature which is very handy for finding posts and threads from people who may have similar conditions.

Just post where you feel comfortable.

You have a lot going on and I'm sorry to read that. I am sure you will find support and information here. There are so many caring and sharing people.

take care there.

Welcome 2ManyProblems.

Natalie,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thank you so much - to all of you! I can see already that this is a great place to be for support and fellowship Happy Thanksgiving!

[At first it started with me sleeping on my hand under my pillow and waking up with complete numbness from ring and pink up to my elbow. I was diagnosed with Cubital Tunnel Syndrome. Some odd things started happening though - the pain was excruciating and then my left arm started to mimic the problem in my right arm and hand and so I was diagnosed with Reflex Sympathetic Dystrophy Syndrome]
and
[P.S. The numbness, claw fingers, pins and needles, numbness, weakness, cold skin and paresthesia has cleared up in my right hand (the Cubital Tunnel issue), and I can finally hand write again for the first time in six months!!]

You might want to visit our thoracic outlet syndrome forum (TOS ) for short..

useful sticky threads for TOS- good place to start post #1 has tons of info links.
http://neurotalk.psychcentral.com/thread84.html

What you describe above is often some of the symptoms for TOS, also the cubital tunnel - could be a "double crush" or the actual cause is coming from the TOS area- roughly the neck/shoulder junction.
The nerves and blood flow for arms go thru the small space and if it gets pinched can cause all sorts of pain and issues.
Also the holding arms up to wash hair problem.. another TOS sx..

[ shooting pain from my neck down my shoulder - just had an MRI on Saturday..]

Can you get a copy of the MRI written report?
Share it if you like, we might be able to help understand it.

The results of my MRI were, "No significant pathologies but we'll discuss the specifics at your next pain management appointment on the 26th." So I don't really know what that means, but I guess I'll find out. I have to bring in a CD to get a copy of the MRI and I don't have any blank ones and I'm running low on money, but I'll post about what ends up happening when it's interpreted for me on the 26th :-/ Thanks for the link! <3 ...Raising my hands up to wash my hair isn't a pain thing though - it's that it tires me out so much that I have to nap afterward and sometimes take more than 24 hours to recover. I'm so exhausted all the time. A ten minute chore will have me laid up for the rest of the day and night at least.