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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#31 | ||
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Elder
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I had trouble paying for my pain meds before I received medicare. Try writing the drug company that makes you medication. Sometimes your doctor will have a form to fill out to submit. I did this and received my pain med free for about a year, until I qualified for help. This may get you by without the hardship these drugs cost. Ginnie
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"Thanks for this!" says: | CRPSsongbird (03-15-2013) |
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#32 | ||
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"Thanks for this!" says: | ginnie (03-15-2013) |
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#33 | ||
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Elder
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My free meds were narcotic. Took Kadian a form of morphine. That was free too. Some of these companies will give in, especially if your doctor follows up with a note. Give it a try for those narcotic companies, worth a shot...ginnie
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"Thanks for this!" says: | CRPSsongbird (03-15-2013) |
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#34 | ||
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****************************************** Respectfully, CRPS Songbird, there IS a lack of planning. If you look at more of that post..... "Financial planning may include reworking the family budget, running up credit cards, working extra (for those who can), asking the doctor's office for samples, talking to the drug company about free or reduced cost meds, borrowing money, trying to get state services to help pay for meds or food/housing, making an alternative plan with the doctor for meds tha are more affordable. " You can clearly see I accounted for situations in which we just can't afford the meds. That doesn't mean there isn't planning that could be done. Have you looked into the free prescription help programs ? Have you asked your docs for free samples ? Have you contacted the company to see if they can help ? Do you have access to credit cards ? This is not meant to be condesending if you have looked into those options too, it's just that you keep addressing only a small portion of the 'solutions' in your responses. That's not a 'demand' for more info......no one here should share more info than they are comfortable with. If you have clearly discussed with your docs that the patches DO help, but you just can't afford them and explained that you NEED another plan, then you might have mentioned that, otherwise it looks like that hasn't been done. If you have had that discussion with your docs, then again, this is ALL on them for sending you to the ER for a non emergency situation. That is ALL part of the financial planning for this. There is no blame here for not having the money. Many here are in a similar, or worse, situation. You've mentioned being over the limit for help because your income is a bit too high. You may end up, like many of us, being unable to work. That will help make you eligible for that money for meds, but you could be up a creek for housing, etc. The financial hardships that RSD adds to our already complicated and difficult lives stinks.
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. Gee, this looks like a great place to sit and have a picnic with my yummy bone ! |
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#35 | ||
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Elder
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Look for my PM this morning. ginnie
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#36 | ||
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Magnate
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Emily, it seems really soon after diagnosis for you to be taking schedule 2 narcotics. Have you tried low dose naltrexone? It works well for some, and doesn't have the side effects of opiates, and I believe it's fairly reasonable.
You're still in that "window" where you still have the greatest opportunity for remission. If you mask the pain with schedule 2 narcotics, you will lose some of the urgency to try meds and procedures that could potentially help you recover. It's like going to a dentist for a shot of novocaine everyday but not having him/her perform the root canal you're in Desperate need of. You didn't like the SGB you underwent, which I can understand, but when done well they can give substantial relief for a few weeks. Ketamine is not something I look forward to for the experience, but the results have been remarkable. Can you get hyperbaric sessions approved? Have you tried warm water PT? Massage? Etc. If your work has been reduced due to your injury, the hospital should be paying the difference. If you're working, but simply delaying the fact that you need a leave of absence, delaying will not help your chances for remission. And maybe this means collecting food stamps, cash aid, and Medicaid for 6 months to try and restore your health. If you're simply putting off the inevitable, your odds are much higher if you take time off now and focus on remission, than wait until your condition worsens and becomes permanent. And if you need a housing subsidy which means living apart from your bf temporarily, than that might be a sacrifice you both will need to accept. (If he really plans on marrying you, your urgent health needs should be a priority after he pays his child support and before he helps his adult child. Many college students don't receive help from their parents. And this can mean she takes out loans which he agrees to help pay, for example.) There have been people that refuse opiates years after diagnosis, that I've encouraged to explore the options. You will come across my posts where I discuss my med combo, but I felt uncomfortable doing so in your other thread... Choosing to take Schedule 2 narcotics is a long term commitment that should not be entered into lightly. It's best to try the meds your doc has experience prescribing. You don't want to be your doc's first patient to try fenatynl patches! People do OD, and people do die taking these meds. Driving safety becomes a serious issue on these meds . (You shouldn't be driving anyone else's children and you must be careful not to drive when meds are too low or too high in your system. This is difficult to do without help when you're working and/or have children. I drive infrequently and am unable to safely drive several times per week.) Usually those taking schedule 2 drugs have reached the point of permanent disability and can no longer work. (If you have a job with any safety concerns, you may not be able to.) The ability to have constant access to them is mandatory--if you can't afford meds that cost several hundred dollars or up to a few thousand, it's a bad idea to start them. Same with just the hassle of getting the scripts written and filled. (Methodone is inexpensive option though.) Seeing a psych doc was a great step. It's you fortunate you have a short window in which to deal with all these issues. And there's no guaranty that should you make some tough choices, you will go into remission, but there is an opportunity for it. |
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"Thanks for this!" says: |
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#37 | ||
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Elder
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How are you doing? I was thinking about you this morning. ginnie
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#38 | ||
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Member
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I'm not on anything SUPER strong. I have Oxycodone 10mg which I only take 2 a day usually 4 if it's a bad day. That along with the Valium 2mg up to 2x's a day as needed has seemed to help a LOT as far as daily pain control. So... I'm not sure why that would be such a big deal. Obviously my DOCTOR thought it would be ok.....
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"Thanks for this!" says: | ginnie (03-18-2013) |
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#39 | ||
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I'm sorry I'm laughing at the "hospital should be paying" line. lol. It is NOT that easy. Yes they should be paying for it, but they are fighting tooth and nail to avoid claiming ANY responsibility. I'm fighting right now just to be reimbursed for the medications!! As far as my SGB goes, it didn't work. At least not for more than barely a couple of days. So they didn't want to do it again, and thought since I didn't have any luck with that and the only other procedures were just MORE invasive the didn't think I was a good candidate for any other treatments like that. Like I have said repeatedly.....the narcotic were last ditch as far as meds go. And until I can get some sort of compensation I have to keep cost DOWN. I might be getting SOMETHING reimbursed by the end of the month which would be great so I can get the patched and a compound cream my doctor wants to try. I make "too much" to get medical from the state, I am not old enough for Medicare/aid and I DO get food stamps. Just not much. I know you are trying to suggest things to help, but I have already done everything gone to every state agency/program. Since I'm not "disabled" enough or elderly, or pregnant (god forbid), there's not much I can do. So while I truly appreciate the suggestions. It's not a lack of trying or planning, or anything else you and Finz have mentioned. Trust me. I am a smart. capable women. I KNOW where to get help, I am just not able to get it. As I stated before I make 74.35 too much a month to get the help I need, and the hospital "paying back" anything that will be worthwhile for me is going to take an extremely long time. I am most likely going to have to use an attorney, I already have an appointment, in fact. So again thank you. But I don't feel I am taking anything "too soon" as far as narcotics, they are still fairly low dose.....my doctor is hesitant to try some of the other anti-seizure and "Cymbalta" class medications due to the severe adverse reactions I had. So not much is left in my budget right now.....I don't even know why I'm explaining that anyways. My doctor put me on them...I'm not getting them off the street or something. Oh and as far as remission....it's progressing rather than remising. My doctors are (hoping it's not) starting to think it's permanent |
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#40 | ||
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Senior Member
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Has anything other than one SGB been done that might help prevent progressing and effect a possible remission ? I believe THAT was the jist of LL's comments here......that if find some degree of pain mangement with WHATEVER works for "now", you are not just making each day more livable (as is my case.....and the case for many others here)........in your case, because it is still early(ish), you could be missing your short window of opportunity to fight and subdue this monster, instead of just having to learn to live with it. Nothing more. Many of us here depend on narcotics. Opiates aren't a dirty word here. Have you shared here what they incident was with the hospital and their liability on this ? I only remember that you had what should have been a "simple" injury that progressed into RSD. If this is a potential lawsuit, I'd encourage to to retain a lawyer quickly and try to move forward. Any money that you could put toward therapies that might help with remission would be a great thing. Best of luck with this.
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. Gee, this looks like a great place to sit and have a picnic with my yummy bone ! |
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