Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
They won't take me because I have Rhemtoid arthritis. There theory is to treat the RA not the pain and I ge that. But can't they treat the pain until I get the RA under control? I mean I have to have my mom help me walk the other day because the joints on my lower half were so swollen that they wouldn't support for a few minutes.
The only thing that work was being on 300mg of ms contin a day but that only worked for two weeks then it built up a tolaerence to it so my doctor gave me 180 percocet of 10/325 a month and lowered the ms contin to 200mg a day. The percoet does work a little bit but its not enough the pain is still too strong. I know I whine and complain alot and I'm sorry for that its been like this for 5 years since I was 20. I even had to quit work well they kinda pushed me I worked as a cashier at Wal-Mart and my manager wrote me up for walking too slow I mean who does that seriously.
They saw when I first started that I was healthy and able to do it and they saw me go down hill and they thought I was faking it. I went on a leave of absence in March and I did get approve for disability with in a month the 5 months waiting period sucked but I got through it I just can't help to think is it going to get better?
I was told if I lost weight it would help. I weighed 230 to 240 pounds when I went on my leave from work. I am currently down to 182 woohoo go me there is something positive :D. But the pain has gotten worse even losing all the weight go figure.
When I first wake up for the day it takes me on average 2 to 4 hours before I can even sit up and other 30 minutes to an hour before I can even stand thank goodness for a strong bladder. They want me on this medication called rixuan which is an iv infusion every 6 months. but its 3400 every 6 months so thats out of my budget. I make too much on my disbility to have medicade. I guess I am just venting its 2:00am and my mom is at work and my cats are sleeping so no one to talk to I guess. I have lost 95 percent of my friends because of this stuff and I am really thankful I have found this group. Anyway I will go back and fade it the corner again :P I hope everyone had a good New Years and I hope that you guys get the help you need :)
Leigh-Ann
The only thing that work was being on 300mg of ms contin a day but that only worked for two weeks then it built up a tolaerence to it so my doctor gave me 180 percocet of 10/325 a month and lowered the ms contin to 200mg a day. The percoet does work a little bit but its not enough the pain is still too strong. I know I whine and complain alot and I'm sorry for that its been like this for 5 years since I was 20. I even had to quit work well they kinda pushed me I worked as a cashier at Wal-Mart and my manager wrote me up for walking too slow I mean who does that seriously.
They saw when I first started that I was healthy and able to do it and they saw me go down hill and they thought I was faking it. I went on a leave of absence in March and I did get approve for disability with in a month the 5 months waiting period sucked but I got through it I just can't help to think is it going to get better?
I was told if I lost weight it would help. I weighed 230 to 240 pounds when I went on my leave from work. I am currently down to 182 woohoo go me there is something positive :D. But the pain has gotten worse even losing all the weight go figure.
When I first wake up for the day it takes me on average 2 to 4 hours before I can even sit up and other 30 minutes to an hour before I can even stand thank goodness for a strong bladder. They want me on this medication called rixuan which is an iv infusion every 6 months. but its 3400 every 6 months so thats out of my budget. I make too much on my disbility to have medicade. I guess I am just venting its 2:00am and my mom is at work and my cats are sleeping so no one to talk to I guess. I have lost 95 percent of my friends because of this stuff and I am really thankful I have found this group. Anyway I will go back and fade it the corner again :P I hope everyone had a good New Years and I hope that you guys get the help you need :)
Leigh-Ann
I'm on disability and have medicare and I also pay for a supplement to cover what medicare doesn't.
Try and find something you are interested in that doesn't add to your pain so that you can make new friends.
See if they have a support group near you for people with RA they might be able to give you more advice and you could make new friends there.
I think it's great that you've lost weight that's something I have to work on this year.
Sending Hugs & Prayers that things get better for you soon.
Mary
I know the weight can be an issue. But really...... this is the standard "blame the patient for the pain" routine.
You should have pain relief. I will pray that you find a really compasionate doctor who treats you like a human being.
God bless you for your patience. Hang in there
I had to keep up my regular insurance too till I was able to get medicare and it just ate up my savings.
I wish I had some suggestion but I can't think of any right now.
Maybe call the support group and see if there is anyone from your area that you could ride with.
Have you talked to your doctor about the cost? Often the drug companies have programs to help with the fees. Or there are other medications you could try that are less expensive. You should also talk to Walmart. Their insurance may not be the best but they have been know to help associates in need.
Don't give up because you hit a road block. If you throw out lots of lines you are bound to get a bite on at least one.
Sorry you have to go through this at such a young age. I will pray for you.
David.
-Jennifer
First -- Leigh-Ann -- please don't fade into the corner. we are her for you, so rant, whine, and cry to your hearts content. It helps!!
Second -- SunnyMorn --- did I see that right?? you are 5'6 and weigh only 125 ?? I am 5'3 and I am about 135 for the most part and my Dr. has NEVER said anything about my weight! he feels that I am healthy and that my weight is fine. I hate Dr. who try to tell you that it's your fault for your pain, I think it happens because they can't help you and rather then admit to their own inability to fix you, they find a way to place the blame on the patient. we don't need that, we have enough negativity and pain in our lives from people who don't understand, we don't need it from our Dr.'s who should understand!!
Alas federal law is what mandates the two-year wait for Medicare once you're eligible for Social Security Disability (the only exception is for patients in complete renal failure who need dialysis, but then there are weird rules if you have other insurance coverage as to who is the primary and who is the secondary payer).
Leigh-Ann,
I'm so sorry to hear about your predicament. All too often, that Social Security Disability payment is as little as $2 above your state Medicaid program maximum income level (my brother discovered that when we was immediately approved for disability, then dropped by the state because of the extra $2 per month and had NO insurance for a full 2 years despite having severe medical conditions that needed on-going treatment (it's a dumber than dirt rule; some insurance coverage needs to kick in immediately). But you can petition for a waiver, especially considering that your condition is irrevesible (RA can only be treated, not cured) and you will quickly age out of your mother's insurance coverage (by age 26). Also look into Social Security Supplemental Disability Income payments; it may be a bit more generous than your state is.
Also, once Medicare does kick in, you can petition the state to pay your portion of the Medicare payments so you don't lose out on any of your benefits; my brother was able to convince the state of Arizona to do that (amazing since that state is cutting virtually all benefits for those who arent' already independently weathly!). So keep that in the back of you mind for futher reference.
Check your mom's insurance plan and find a good rheumatologist; they can and may well be willing to prescribe the pain medication while they get your RA under contol. And take advantage of every possible drug company assistance program; there are some that will help pay for almost the entire cost of your medication (not pain meds; they can't legally pay for those, but the RA medications). Depending on where you live, there may be a clinical trial underway where you can get both the treatment and medication for free...and often it's well known and already tested medication that is being evaluated for additional use or post marketing studies, so check www.clinicaltrials.gov.
While it must feel the weight loss made the pain worse, chances are it was just coincidental and occured with a flare in your RA. But when losing weight, you want to focus on a healthy diet that will be as anti-inflammatory as possible, so ideally you want to focus on a safe, well balanced vegitarian-based diet (instead of lots of meat and dairy products). This will be easier on your body and cause less inflammation overall.
My disease, polycystic kidney and liver disease has a signficant autoimmune and inflammatory component and those of us who follow a more vegetarian/anti-inflammatory diet (while still ensuring we get enough protein via legumes, beans, peas, lentils, as well as a variety of whole grains, fresh fruits and vegetables and omega-3s and a healthy balance of vitamins (in my case, prescribed by my doctor, especially the B-12, which is hard to find in adequate amounts in non-animal products) tend to do better, often with less pain (large organs can be incredibly painful) and we retain our kidney function longer. There have been no definitive studies to prove this is beneficial in my disease, but it is beneficial in all other kidney diseases (mine is genetic and the cyst growth starts in infancy or shortly thereafter and the disease lasts a lifetime (no treatment, no cure), so a 3-year study is a blip in time for us. You may find a good, healthy vegetarian diet (and it's not all tofu and protein powders; it's fabulous, well balanced meals full of variety and easy to find ingredients and even fast food versions) may help reduce some inflammation and help you lose some more weight and alleive more of the pressure on your joints.
As for those friends who have abandoned you, they weren't true friends. Friends stay with you through thick and thin (literally) and in sickness and health. You're young, you will meet plenty of new people and develop new friendships, in person as well as online (and I've been honored to meet some of my online friends in person and wow, it's an amazing experience when you've been talking and sharing information for years and finally get to meet them in person!).
Hug your cats, hug your mom and give yourself a big hug from us as well. And then check out the options for appealing the state medicaid decision, the drug company programs (focus on the specific drug your rheumatologist wants to use as well as the generalized drug programs) and keep looking up. And find (or keep) a good doctor who will treat YOU, not just your RA.
I wish you all the best! :)
I have been on SSDI since 2004 and got my Medicare before my 1st SSDI check so I had NO idea the system had changed that way. It seems if you are disabled enough to get disability, Medicare should be a given. That is horrible to know.
I also agree that the friends you lost weren't friends at all. Many of us in pain have went through this including me. Some disappeared out of sight only because I couldn't do the things I used to and I was only 31 when I became disabled.
I have RA also but not to the degree you do. It does hurt very bad and I was already on strong long acting pain meds with breakthrough meds before I got RA.
I don't want to take any of the meds that are out now for RA as the side effects sound worse than the symptoms I have now.
I also always try to find more natural ways of dealing with pain even though I do remain on strong pain meds.
I got up to 185lbs at 5'2" within a little over one year after I got hurt and couldn't walk. I'm back down to the weight I was when I was working and it does help my RSD pain but not the RA pain.
Only through meeting others in pain did I begin to find true friends again also. I now also know who in my life are true friends; even ones I've met since RSD.
I live alone as my Mom had to move in with my Grandma and Aunt one year ago now but I would be so lonely if I didn't have my 2 cats. What great companions they are & my female knows when I'm hurting physically or emotionally.
Speaking of which, she is on me now trying to make me pay attention to her and she needs it.
We are here for you. You have found friends here.
Rhonda, IN
I have to say that for your original inquiry...I absolutely agree with you! You can work on controlling the RA....but not until you can focus your thoughts and efforts somewhere else beside the incredible pain you are in.
It seems to me that NO ONE wants the ultimate responsibility to prescribe medications for pain. My PHP initially would not prescribe once she relized that I actually had a very serious neural impingement so she referred me to the PMD. I saw two different ones--only once I might add--and the first one was a horrid, demeaning bunch of poopheads and the second one told me that they do not prescribe pain medication, they are there to fix the pain with treatments. Uhhhh, really? They also told me that any MD can prescribe pain medication and that is not their job.
I am just so thankful that my MD offered me the grace of realizing that my pain was more important than their degree sizing contest.
As for medicare...I work for health and welfare and I am fully aware of the benefits and the issues that are involved. Each state varies a little in the actual administration of benefits, but the basic rules for food stamps and medicaid / medicare are set by the feds.
HUGS to you my friend. I am so very sorry for the pain that you are in and I hope you find some relief soon.
I'm an RN with severe chronic pain. Here are some ideas to help you right now:
1. Google "rheumatoid arthritis pain support". I just did and there were many links I think might help you.
2. The first is the top link I saw, on WebMD. Check it out - some really good info.
3. Here's a link on the Google page with the latest research on what helps RA patients:
http://www.everydayhealth.com/health-report/understanding-rheumatoid-arthritis/new-research-findings.aspx.
4. Google for and join an RA support group; an RA pain support group would be even better.
5. Check out the site for the Rheumatoid Arthritis Foundation.
6. Go to Amazon and look up "Get It Done When You're Depressed" by Julie Fast and John Preston. I think it cost $10. This book is a godsend with many ways to help you function every day with a chronic disorder (even if you're not depressed). I think everyone should read it.
I will hold you in my heart,
Nancy