New here and need help very very desperately

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New Member

Date Joined May 2012
Total Posts : 1
   Posted 5/13/2012 9:27 PM (GMT -6)   

Hi everyone,

Thank you in advance for reading my story.  I truly appreciate any and all advice.

I have become desperate lately to find help. I should start out by saying that I have had tremors since the age of five. My tremors have caused pain from time to time over the years but I guess that I thought that everyone suffered from pain from time to time and so I just dealt with it. about three years ago my pain took a turn for the worse. The pain in my middle back became almost constant instead of once or twice a week. My lower back right above my ‘bum’ started bothering me more often than not and now the pain also runs down into my legs. My neck is constantly stiff, and I have these headaches that feel like I have a large rubber band stretched around my chin to the top of my head. When I wake up in the morning my hands are always asleep to the point where I can’t move my fingers which is very very very painful. It takes almost an hour these days for me to be able to get out of bed in the morning. I have had to crawl on my belly to the bathroom so that I didn’t mess myself because if I put pressure on my feet they will crack and pop and hurt until I could scream. Not to mention the night sweats that are so bad that on more than a few nights I have had to change my sheets twice…twice in one night!!

I have been laid off and so I do not have insurance so I have been going to the free clinic in the town that I live in. The nurse practitioner that volunteers there has been helping me as much as she can. She has put me through a gambit of blood tests and x-rays. She set me up to see a neurologist because of my tremors, and the neurologist set me up with a rheumatologist. Here is what all of the tests and the doctors have come up with so far…Blood tests; very low vitamin d (5), very low thyroid  hormone (.360), ANA titer came back ‘on the fence’ at (Positive >1:80…1/160 Homogeneous),  low magnesium (1.6), negative for Sjogren’s, Lyme, rheumatoid factor (8.7).  X-rays showed straightening of the lordotic curve and my rheumatologist says that I have cervical ribs that are causing thoracic output syndrome. MRI has shown no lesions on my spine. I have been told that that rules out MS.

These are the things that I have been diagnosed with; Ehlers-Danlos syndrome type 3, I have very loose joints and a lot of skin problems, thoracic output syndrome, benign essential tremor, degenerative disk disease of the cervical spine, and bulging disks in my lumbar spine. My nurse practitioner says that she thinks that I have fibromyalgia.

All I know is that I am in pain…screaming pain at times, and I need some help. The nurse practitioner has prescribed everything that she can (she can’t prescribe narcotics) and because of the Ehler’s-Danlos nothing has worked, nothing OTC has worked, not gapapentin, not Cymbalta, not Tramadol.

Last week I bent over to pick up my shoes and I couldn’t stand back up straight. The next day my Mother took me to the emergency room. After sitting there in pain for seven hours the Dr. said that he saw that I was uncomfortable and gave me 4mg of Morphine before he left for the evening and put in my chart that I should have pain meds to go home with. 14 hours later the Dr. that came on after him said that she saw no reason to prescribe pain meds and discharged me.

I don’t know what to do. None of the Dr.’s seem to care that I am in so much pain. At 36 years old I feel like my life is over, that I exist, in pain, for nothing more than to be the Dr.’s play thing. I am so tired of just dealing with the pain all of the time, this isn’t much of a life.

What should I do? Where do I go that will help me?

Monty's Mom
Veteran Member

Date Joined Aug 2010
Total Posts : 664
   Posted 5/13/2012 11:08 PM (GMT -6)   

I want to welcome you here to Healingwell, and tell you that there are very many caring and compassionate people here to help, sympathize, and listen. I am sorry for the pain that has brought you here, but glad that you found us! I don't know much about tremors, but I do know the back pain, stiffness, headaches, and numb and tingling hands and feet in the morning. I have been diagnosed with fibromyalgia, which causes me to have painful joints, back pain, neck pain, shoulder and arm tingling, and the doctors too think that there are times that thoracic outlet syndrome can be causing my painful hands, but mine is improved with stretching, although the joint pain is always there. This article from another website has many helpful stretches.

For someone like me with abdominal and pelvic pain and scarring that causes pulling and increased pain, I must do the chest stretch standing and raising my arms to shoulder level, and gently step forward to stretch my pectoral muscles.

I am relatively young, 33 in July, and my severe pain began 4 years ago now. I was not diagnosed until I had suffered for a year, and only with surgery did they find my pelvic adhesions, endometriosis, and reasons for my other various health issues. I have gone through periods of no health insurance, on US state medical assistance, and private insurance at the beginning. I am sorry that you are not having adequate treatment for your pain. Many of us here have had similar issues, and it just plain sucks. It still makes me angry and disgusts me to know that there are so many people who are living in terrible pain because of the mistakes of others. I suggest that you see the rheumatologist, and try your best to get into a pain management specialist when possible. There are many that understand insurance issues and will help work with you to get you the treatment you need. The rheumatologist can help you if you have fibromyalgia or rhematoid arthritis and various other issues.

Is there some form of medical insurance assistance or charity care available where you are? If you can't afford the medications the doctors prescribe, talk to them or the office staff about medication assistance that may be available through drug companies. The internet can be your best friend with this.

In the meantime, I hope that you get some pain relief soon. You can try heat and ice on your neck, shoulders, back, hands or feet. I have found for the headaches you describe that heat combined with rubbing the muscles where my neck meets my skull helps me tremendously.

I am sorry for the pain that brought you here, again, but glad you found it. I hope I have been helpful in some way for you. If not, keep hoping and check back, there are many others here who may be able to help you more.

MODS- I apologize if my posting of the website for the stretches is not correct or against the rules. If it is, please let me know how to do it properly? Thanks for all you do!

Post Edited By Moderator (Momto8kids) : 5/14/2012 12:17:48 AM (GMT-6)

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 5/14/2012 1:21 AM (GMT -6)   
Mindy... Posting the website is just fine :)

LeeGee - Welcome to HW... but I'm sorry that you are suffering w/ chronic pain. There are so many wonderful, supportive people here on the board... I'm heading to bed now, but I will write more tomorrow. I just wanted to take a moment to welcome you.

Take care all,
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

Veteran Member

Date Joined Aug 2006
Total Posts : 9664
   Posted 5/14/2012 9:16 AM (GMT -6)   
Call around and see if you can get a lawyer to help you file for disability,
maybe try a lawyer referral system...For me sometimes a good moist
heating pad helps with the fibro...maybe place a moist heat pad on your bed
and when you wake up in the mornings turn it on and see if that might help
better in the mornings, get one with auto shut off...or maybe try ice and then heat.
Tart cherry juice can help with pain but use it at very low amounts like starting
with 1/4 cup and with the dinner meal as it can make you sleepy...ginger
can sometimes help with pain look for both these at health food store (the ginger ale they
make now doesn't have the ginger in it like it used to)....Many many well wishes and
do get Vitamin D supplements as low vitamin D can make pain do get
the vitamin D supplements...
Keep us posted others will come by with better advise, and many well wishes to you...
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Veteran Member

Date Joined Oct 2008
Total Posts : 2024
   Posted 5/14/2012 12:49 PM (GMT -6)   
Hi LeeGee, just wanted to welcome you to our chronic pain forum. Glad you found us but sorry you suffer so much. Hope you will stay with us and keep us up to date on how you are doing. You will find everyone here to be very compassionate, understanding and non judgemental. Many will have answers to your questions and resources to help you out.

Hope you can have a good week.


Veteran Member

Date Joined May 2012
Total Posts : 828
   Posted 5/14/2012 10:47 PM (GMT -6)   

I've been suffering from a number of conditions that are extremely painful, for a long time. Including really bad back pain caused by a muscle imbalance and really bad spasms.

I know what it's like to be in a lot of pain with no obvious solution in sight. I was 22 (my overall condition, Cerebral Palsy, I've had since birth and all the conditions the CP causes have been progressively getting worse) before I was able to get any help. I had no insurance, I'd never been on meds, I hadnt been to a dr in years, I just pushed through hoping it would get better or go away, I was in denial that the Cerebral Palsy was catching up with me.

I ended up applying for disability and then was accepted to Medicaid, and then Medicare (which I'm on now).

But because our government is so lovely, they terminated my Medicaid, months before Medicare kicked in. I had no insurance and very little money. I found a "low cost/income based" clinic in my area and paid very little for my appointment and was able to see a dr who gave me a script to get me through, although it wasn't the medication I was on while I had the insurance, at least it was something.

If your conditions make it so you can't work right now, disability might be an option you want to look into, and then see what medical assistance programs (like medicaid) you would be eligible for.

Also, there are "income based" clinics like the one I went to who offer really low rates (and/or payment plans) and the drs there may be able to prescribe you the stronger meds that the NP can't. Once you get the script(s) Walmart and Publix and some other stores have low cost prescriptions.

I have no idea where you're located or anything, but when I was in need of the "low cost" clinics and scripts, I spent a lot of time on google and on the phone. It took a lot of trial and error but eventually I found someplace.

I really hope things are better for you this evening and that I can be of some help. This is a wonderful place for advice, or an ear, and I've enjoyed my time here so far. I hope you'll stick around.

Retired Mom
Veteran Member

Date Joined Feb 2010
Total Posts : 1753
   Posted 5/15/2012 5:49 AM (GMT -6)   
Hello and welcome to Healing Well.  I can honestly say that I do understand where you are in your pain....many of the things you describe, I have had on occasion.  I thank God that I have medical intervention now and have medications to help with the feelings you describe.
I don't want to sound like "I have everything you do" because that is simply not true..but I remember the days of crawling to the bathroom and hoping I made it and the days that I thought the pain would never let up long enough for me to get my breath in the morning.  It is especially bad if I sleep in the same bed w/my hubby (something I miss terribly) or if we are in another location when we try to sleep. 
I want to say there is help out there.  I don't have the answers for you and I do still have chronic pain....that can be about more than a person can stand at times...but there is help that does give some relief.  Please keep trying to find the answer.  Don't give up just because there is some jerk who doesn't believe you.  Most of us here have had some jerk who didn't believe us on several occasions each and most have had a lenthy process to find some kind of relief....but many are on a medication schedule now that gives them some quality of life.
We are here for you no matter if you just need to vent for a while.  Since you are limited in your medical help, you should likely consider taking suplements that will help with those areas you KNOW are low.  Even this small change could make a big difference in how you feel. 
Good luck and again...welcome to HealingWell
Failed TLIF L5-S1, Miltiple Bulges/Herniations, Scoliosis, Pituatary Disorder, Fibro, Failed Bladder Surgery, Failed Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (now trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendonitis, Adult Onset Flat Feet, & Vision Issues
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