Discouraged today!

By LP Monday, January 26, 2009

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I woke up today with increased pain in my SI joint after a relatively nice day yesterday. It seems like I just can't keep my head above water! I have been off work for 8 months. I was turned down for LTD from my work (although I'm going to appeal). I went to see my family doc. and she is sympathetic but states my complicated case is way out of her league. I need her because I can't see my physical med doc very often due to her busy office and she is unavailable by phone! This has been very hard to get anybody to have the whole picture. My husband is supportive but sometimes I feel so alone and overwhelmed by the pain and disability, financial challenges and work stress. People have very little understanding the life drain of chronic pain. It takes so many things to keep ones's life together. I wish there was some place to go for help and support. Today I can't carry the load . Thanks for your ear.

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Karen Lee Richards, Health Guide

1/27/09 3:01am

I hope we can provide some support and encouragement for you here. I'm sorry to hear your pain is worse today. Yes, chronic pain can be incredibly draining. And even the most caring people can't really understand what it's like if they haven't experienced it.

Are there any chronic pain support groups in your area? Just being able to talk to someone else who understands what you're going through can help so much. If you can't find a local group, you might try visiting the support group we have in our forum. It's called “The Daily Grind.” It's a great group of friendly people who chat with and encourage one another regularly. Just click on the current month and join the discussion.

http://forums.healthcentral.com/discussion/chronic-pain/forums/a/frm/f/1361017

(Note: If you've never been to the forum before, you'll have to register separately from your registration here on ChronicPainConnection. You can, however, use the same e-mail address and password if you like to make it easier to remember.)

Betty Boop Too

1/28/09 9:44pm

Hello LP

I'm very happy that you've found us and I wanted to also stop by and say Hello & Welcome to the Chronic Pain Connection. There's a tremendous amount of information & support to receive around here and I for one would be more than happy to visit, chat or correspond with you and try my best to support you as your head through your jouney through chronic pain.

I've been thinking about you since I read your post last night. Yesterday was a pretty good day for me too, but last night was a miserable all nighter of NO sleep and horrible nerve pain that I cannot get taken care of until Febuary 10th. The procedure I get to help with the nerve pain in my left lumbar, hip and left leg is unfortunately just a portion of my pain, but the procedure and injections really help me to walk better and with less pain, so it makes it worth it to relieve even a small amount of pain.

Days in chronic pain can wax/wain back & forth to a small amount of hope, to dreadful discouragement. The discouraged days seem to go for ever and seem like there are far more of them than good ones. Winters for those in Chronic Pain can seem to last for ever and hopes of spring time nag at our hearts in hopes for warmer weather and less pain. (if your one that the cold effects your pain)

I think it's been almost a year & 1/2 since I joined up here and I will say that my friendships and correspondence here have really helped me to deal with a life in pain. I'm not really one to go out somewhere to a group meeting, I live way out in the boonies and it's a 40 min drive to the nearest town, so I'm in higher pain before I even get to my disired location. I've really done well with participating in our support group here and it's really helped me to cope and share with others who understand. I hope you'll stop in to check it out and say Hello. Everyone will be very happy to meet you and they are all very kind and understanding people, so don't be shy. I hope to visit you soon.

Take Care

Gentle Hugs

Betty

TPB1960

1/29/09 7:50am

What a frustrating injury. I was in the Building Trades and was injured on the job. Unfortunately, the SI Joint injury did not show up on x-ray, Catscans, MRI's or any other test. I did mange to get Worker's Comp because I reported the injury right away. Then the trouble begins when they send you to their quacks who do their medical assessments. The emotional strain of them playing God with your life caused me to start having mental issues. I could not take the pain and the stress that they would cut me off financially. When they get their bogus medical assessments, you are forced to get a Lawyer so you are not cut off from your benefits. There goes %20 of what you were getting. Next they may agree you can't return to your old job, but they have found jobs that you can do. They have a formula that takes the wages they feel you can earn, even if this job is not available right now, and have a formula to lower your benefit amount even more. In essence, they can starve you back to work, take a settlement that will not be the value of your injury or generally make life miserable. It would be a good idea at this time to get a Social Security Lawyer and apply for benefits. If it looks like you are going to get S.S.D., it may pay to settle with Worker's Comp.

Sally

1/29/09 8:18am

I hope you get an opportunity to read this as I know anyone who reads how terrible your feeling will want to reply and be supportive. I understand deeply with how you are feelling. About 10 years ago I was in a stupid accident. At the time, SI joint was discussed and I failed injection therapy ao, in fact, I was made to fell so sad, too bad, no one wants to take care of that part. At the time I also tore two discs in my cervical spine and had those repaired. What a breeze. They have been great. However as the years went on the pain in my hip, back, pelvis or what ever got worse and worse. Like you, your husband and everyone else can only be so supportive. My whole life spiraled downhill. I couldn't get out of bed most days. The really hard part is for the most part it is an assumption its your SI joint since no real tests show the problem.

Anyway in 6/06, I went to Emory and had the joint fused. I never really recovered and continued to suffer unbearably. Finally, after weekly visits for extra pain medications (I was on a long acting as well as an instant release opiate), I saw an orthopedist who doesn't have any real claim to fame for SI joint surgery. I had and MRI and a CT scan that weren't much help but he offered an attempt at a revision with the understanding that this was salvage surgery and I had just as much a chance of being worse or no better as I did of getting any better. At that point you have to try something and I went ahead. This was very drastic surgery, I can give you the gory details some othre time if your interestd. This was the hardest to recover surgery I have undergone. It was easy 4-6 moths of pretty much bed rest. Sitting, standing and walking are unbearable. I have been so ready to give up so many times. I finally hit the six month post op date and can finally say I am seeing improvement (He said 6 months to a year) recovery. I will never be good as new. I can get around most days with a cane. On those bad days (and there always will be) its mostly the bed.

I understand and know what your going through. I would get an attorney to help with the disability thing. They always turn you down first. I've haven't gone that route since I work for the greatest boss ever and can work from home sometimes. Though, every one of my office notes from my orthopedist state how severely disabled I am, he won't let me go that route.

If you ever decide to look into SI joint surgery, be careful. Prepare yourself for 6 + months of essentially vbed rest or limited activity. It drains you mentally, physically and it feels as though you have been robbed of your life. Preparing for the worse instead of being a PollyAnna, I believe helps me deal with setbacks.

Take care of yourself, stay flat. You can e-mail me at eynon@musc.edu if I can answer any questions about your particular problem. I think I am the poster child for what can go wrong and right.

Sally

Discouraged today!

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