Tired of waiting when i need help now.

I am very depressed and emotional over my illnesses and waiting for ssdi to tell me if they will allow me my disability benefits and health care.

Being in pain everyday of my life has aged me physically and emotionally.
I am very short tempered, I hate what I have become, and I try so hard not
To be short tempered with anyone.

I have Tarlov Cysts that are erroding my sacrum bone, its like sand paper rubbing the
Bone away slowly to LIVE bone that has nerves within it. I have fibromalaygia and chronic fatigue as well. Each morning when I awake, I'm hunched over like a 90 year old woman who has to take pain medication just to stand up straight. I walk with a cane or a walker, but each step or. Movement gnaws at the cysts rubbing against the bone.

Has anyone had bone pain before? It sucks. Because of the placement of these cysts, it is pinching the spinal cord and also has pushed a nerve over at S2 which causes nerve damage. The longer it takes for surgery takes the more damage it does. I need surgery to clamp off the cysts and a metal plate put in so they will no longer errode the bone.

Because I am not "terminal" I don't qualify for immediate benefits through ssdi (social security disability) so I have to wait iin line which I'm told could take up to two years or longer.

I'm stinking mad! Its like no one gets it, if I can't get my pain controlled, how long do they expect me to just be okay with this?

The suicide rate for chronic pain suffers is much higher than any other.

No, this isn't a suicide note, I couldn't do that to my kids. They are older and have their own lives, and I have a grand child who just turned 1. Yet I couldn't go to her birthday party because I was hurting to much. Sighss.

Is there anyone else who has tarlov cysts around the forums? It sure would be nice to talk to people, I feel so alone. I live in my bedroom, the only time I come out is for the bathroom and when I'm hungry which isn't that often anymore. I've lost 65 pounds this last year and I'm not on a diet. While weight loss is a good thing, but not the way I'm losing it.

I now rent a room in a house, my room mate is wonderful. But I only get food stamps right now, my room mate said I can pay them when I get my money. I just hope they mean that.

"In pain and desperate for communication"
GypsyBlu

I'm very sorry you're going through this. I hope your SSDI comes through soon.

My son hurt his back at work, and after surgery for the herniated disk, he found out he had degenerative disk disease along with arthritis in his spine. He had a second surgery to no avail so he's hoping to get a spinal cord stimulator. I really worry about the impact the pain has on him.

I have myofascial pain which goes hand-in-hand with fibro. I was misdiagnosed with fibro because of the myofascial pain, but I ended up having adrenal problems that present the same as the crazy symptoms seem in fibro. Fortunately, with the myofascial pain, I've been able to control it using trigger point massage. In case you aren't familiar with myofascial pain, it's where the muscles get knots in them that refer pain elsewhere. It would be like if your big toe, shin, or any other place hurts other than the 18 tender points. If you're interested in knowing more, check out triggerpoints.net for trigger point and referred pain diagrams. The Xs are the trigger points where the knot in the muscle is, and the shaded area is where the pain is felt. Another great resource for myofascial pain is triggerpointbook.com.

While my pain is basically under control about 80% of the time, I'm noticing that the triggerpoints in my back are freezing up more and more so I too, walk like a 90 year-old woman!! I was at my naturopath's today going over my health issues, and he asked all about it, but didn't offer me any advice.

Don't feel bad about missing your granddaughter's birthday. My grandson is 19 months old, and I've seen him for a total of 2 hours as we live 700 miles away, and the adrenal issues cause untold insomnia so travel is almost out of the question. We did go over this summer, but came right home as I couldn't sleep. Hopefully next summer will be better.

As far a finding others with the tarlov cysts to talk to, you might try finding a bigger chronic pain forum. I know of one, but don't know if I can post the name of it. If you're interested, PM and I'll give you a link.

I know your frustration. I'm a spinal patient, and have had several spinal surgeries. I applied for SSDl in 1995, and it took 2 1/2 years before I finally got it. I was approved in 1998. This was SO frustrating, because I couldn't work during that time!!! The pain was so horrible, I couldn't stand more than 5 minutes at a time, and sitting hurt even more. So there isn't a job where you can lay down -- at least not one that is LEGAL. LOL And not one that I would even THINK of doing!!!

The system stinks, and something should be done to speed things up. Too many people are waiting and waiting to hear if they're approved or not!!

So I understand your feelings and frustrations. I hope you get approved soon. Please let us know when you DO get approved. God bless & take care. Hugs, Lee

Thank you both for listening to me. I do truly appreciate that.
I am to hear "something" in december so I'm told. Only one tinyyy problem. I will be homeless by christmas. The person who now is allowing me to rent a room from him told me he understood I couldn't pay anything but would have to pay back what ever I could% in the future, he would do anhthing for me, a true friend. However... now because of the resession and his jobs, he lost nearly 75% of his clients do to tough times and is looking at me to help out.

I can't! I have nothing but food stamps and I do buy everything with every last cent going to stock the kitchen with food. But it doesn't pay for toilet paper, kleenex, anything that isn't considered a food item.

He's now going broke, and if I can't come up with money by dec, I'm out.. and so is he!
I don't know what to do, I'm freaking out over here. I have depression from my medical conditions, I can't work, god if I could I wouldn't be going without! I just want to curl up in a corner and wither away right now. I feel terrible, he was trying to help me, and now I am costing him money he don't have. Why does it have to be like this? I'm not faking, my illnesses are the real deal, I feel let down by the world.

Gypsy, have you called your Senator? Do this == call him. You'll undoubtedly get his assistant, but BELIEVE ME, they DO HELP. They will see where your case is, and will get it going FASTER. They want your vote, so they will do ANYTHING THEY CAN to get it expedited!! So call him.

I've called my state representative too, but the senator did more work for me.

You might be surprised! It's possible you'll get approved very quickly! I wish you the very best! God bless, and let us know what happens. Hugs, Lee

Hi Gypsyblurose,

I'm so sorry to hear about your chronic pain! It sounds very difficult to deal with. I completely understand your frustration and depressed feelings. I'm glad you're coming here for support!

My husband has chronic back pain as well. He has an autoimmune disease called ankylosing spondylitis, which basically causes your vertebrate over time to fuse together, affecting your ability to even stoop down or turn your head or body. In addition, he has degenerating discs in his upper back, major osteoarthritis in his midback, and a blown disc in his low back. Doctors have said surgery will not help, and no pain medication he has tried (including fentanyl and morphine) has helped his pain. He has multiple other heatlh problems as well, and like you, battles feelings of discouragement and depression.

My h applied for disability and finally got it. But it took him a few years to get it. The SSA usually always turns everybody down the first time, and often, even when they go for a court hearing. However, DO NOT GIVE UP!! Every time you get denied, appeal it. You will most likely need to get a lawyer involved to get your disability. My h got refused twice, and then we got a good lawyer, and he was able to show the Appeals Council why the judge made mistakes in not giving him his disability. This led to them giving my husband a new hearing, and at that hearing, his was granted his disability. Also, once he was granted disability, they gave himj retroactive pay back to the date when he first applied.

Again DO NOT GIVE UP!!! The system is designed to wear you down and discourage you, so that you give up. They will make you see one of their doctors too, who will probably downplay your illness and say nothing is wrong with you. Don't let that discourage you either.

Do get a disability lawyer. In most cases, they will not charge you anything for their services unless you end up winning your case. Otherwise, all you pay for is a very small fee for administrative services.

Again, I'm so sorry about the chronic pain! It can take much of the joy out of life. I know firsthand by witnessing how it has affected my husband. He is only 49 years old and often says he wishes he could just die in his sleep to be free of his pain.

In addition to medications, you might consider looking for a chronic pain support group in your community. That would provide you with some face to face support. Often times, people without chronic pain can't understand how bad it can be, or how much it affects your life.

Best wishes to you.