Painman, I feel ya brother. I deal with every single thing you’ve mentioned, and even those things I’m sure you may have left out. Okay, for a moment of humor… just be glad you don’t also have a “that time of the month” to go with it all.

All kidding aside, I am truly sorry you’re having such a rough day. I too grieve for my former self. And when pain is at an absolute maximum, I also get very short and sometimes just down right angry with anyone I encounter. At a later time, I spend moments with those who are in the wake of feelings I may have trampled, explaining my case, apologizing, and seeking forgiveness.

I think my RSD is much like yours in that it is in my legs (started in one, then spread), and has more recently gone every and anywhere it damn well pleases. And like you my wrists are now weak too. My senses are definitely affected too e.g. my ears are very sensitive to sounds/noises, especially sudden noises, my eyes seems to be failing at record speed, and water when RSD is at its worst (not just crying, but watering). And don’t even get me started on health care or lack thereof.

I am self-employed (what little I can do any more) and could no longer afford the $1k monthly premiums. Can’t qualify for disability due to my self-employment and some work credit BS. So yeah, I’m a new addition to the “system” and boy that’s just working out kickass for me (not). Seems I will have to prove my RSD to my new primary care doc before he will refill any pain meds. I mean never mind the 3” think stack of med records I recently gave him. I guess it’s just too much trouble to read, and probably wouldn’t matter anyway because he says I’m out of his scope of practice and we’ll see if I’m approved to see a specialist that he is trying to refer me to. <sigh> Oh, and did I mention that the hospital nuero dept that I am trying to get referred to has just had a flood of new patients with the shooting that happened in my town (Aurora, CO Theater shooting). Don’t get me wrong, those folks (mostly young adults and children) need help, but I feel sure they are a little overwhelmed right now.

I have five, yes five children, a husband, a grandchild, two dogs, a house w/ yard, a couple of friends, and a business to try and keep up with. It is an epic fail right now on every level. It is really hard for my youngest (9 y/o) daughter. She has never known day that I wasn’t like this, and doesn’t really understand when she sees me cry in pain. I have spent a lot of time asking “why God, why”. Then I came to the realization, why not me? I am not sure of all the reasons, but surely there must be one.

Anyway…. Hang in there man. Your wife and children are counting on it. Get some rest if you can. Tomorrow is a new day and perhaps a different view.

It is pretty hard to get a primary care doctor to prescribe heavy duty meds. Even the surgeon that did my spine surgery would only give me pain meds for a short time.

I did have to go to a Pain Management Sepcialist to handle the pain situation. Leg,feet, ankles burning with PN, as well as severe spine pain. He is the one that has prescribed all my pain meds...Oxycontin, Percocet, Vallium. Had a failed spine stimulator trial, as well. My Pain doctor has taken care of this area of my life.

I do have a primary care doctor for my throid, blood pressure, etc. but he would never prescribe these meds. I would think you would have to see a Pain Management Specialist as well.

Chronic pain is awful. My children are grown and there is just my husband and myself. I do feel guilty because hate to complain and know his life has been affected too. Can't imagine having younger children to care for as well. Hope you get care, at least to lead a little better quality of life.

(Ger)

I take oxycodone.(maximum daily allowed), elavil, the new one. vimovo for anti inflamitorant and stomach liner, lyrica,(now 2x a day at 200 mg each, amrix, for muscle relaxant, plus my migraine meds furicept. (wich didn't work before RSD why the dr thinks it will work now I have no idea. and I have altered my diet to almost eliminating red meats, increase greens,, garlic, (fish.. ) tuna, nuts and other high omega foods. (I still can't stop eating ice cream. thats too cruel..
and (vrae) I too had a landscaping business before RSD.. no longer!!
this beast totally changed your identity. hobbies taken away. as far as doing.
but life does move on. day by day right now as Im sure you all do the same.
.. I had PT today. they sent me home because they could see the pain. they did stim, tried to stretch but where ever they placed their hands caused me more pain so the opted to say.. we did enough for today. well lets see what tomorrow hold for me

Are you taking Oxy ER and/or IR?

Oxycontin is time released, Oxycodone(percocet) is usually used for pain that breatksthru even with the Oxycontin. Although some prescribe the Oxycodone
by itself. I take 60mg's Oxycontin every 6 hrs. for a 240 mg's per 24 hr period. Some insurance companies will prescribe only twice a day so my Pain Doctor prescribes 120 mgs every 12 hrs and allows me to break it to every 6 hrs. As mentioned previously, the Oxycodone (percocet) 7.5mg-523 I take up to 4 a day for breakthru pain.

I also have migraines and take Imitrex. It has been a life saver for me. I get the 50mg size and cut in half to make it 25Mg's. It cost the same for 50mgs or 25mgs. This way (they come in a pack of 9) I get a total of 18 by cutting in half. I take one at the start of migraine and if needed, in a couple of hrs. take the other half. Usually the first 25 mg. works. I also take the Ambien CR (12.5mg) to sleep thru the pain at night. The Ambien 10 mg didn't work after 4 hrs; even if I added extra. The Ambien cR has a time release that distributes and amount later and I get 6 hrs. of painless sleep.

A good Pain Management Specialist can give you a higher dose, if needed, They are very concerned about people looking just for the drugs so I am subjuct to at random urine test. I think it is a good thing and most necessary . The Pain Managemen doctors have to be cautious; but understand pain like none of the other doctors do and most will only allown a low dosage.

I wish you the best and hope you can get help from someone that truly understands pain. I had a failed pain stimulator trial. I do not want to try again. Onces was enough for me.

It is sad the way our lives have change; but once I learned to accept the new status of my life, I was better able to cope with this. The first couple of years were very depressing and just didn't want to be around anymore. Again, wish you success in finding the right doctor.


(Gerry)

The oxycodone is just oxycodone. no er or ir. and as for the migraine meds the furicept is one of the last on the list of meds they can prescribe for it. I tried imitrix when I was 18. regular furicept when i was 13. they tried naprelan, napraxin, isocit, and so on and so fourth. the furicept is furicept with codeine. (it used to put me to sleep so i could ride out the pain asleep) now. it does absolutely nothing.. no relief no sleepy. nada. so migraines are mine to deal with as naturally as possible. but I am always on the cusp of full blown migraine. This beast called RSD. just when I think I am learning to deal. it spreads or the flare gets worse. fir almost a full week I am using 2 canes .and have been couch bound. sleeping in my bed (or laying) seems to just aggravate the beast. as for right now.(dinner) first and last meal of most of my days.(how am I still gaining weight???)

Come on cankle buddy we are in this together! I myself just had a crying meltdown... we all feel weak sometimes. Pain and depression are liars. They keep us from realizing who we can be despite our disease.
I don't know you personally but we are united by our similarities. You have made me laugh on days when I was desperate for a reason to smile and couldn't see past the hurting. You are a beautiful person (cankles and all) and I'm thankful for you!

Big big soft hugs.

The Er is the generic brand of Purdue's who manufacturers Oxycontin. This does not need the ER after it. Oxcodone is different and usually has tylenol addeded. Like my Oxycodone 7.15 is the narcotic and the .325 is the tylenol. This narcotic hit pretty quickly while the Oxycontin brand name by Purdue does not need the ER after it; only ones that are a generic by Teva have Oxycodone ER which again is the generic for Oxcontin. If you do not have the ER after the Oxycodone this is the one that releases fairly quickly...the ER is like a time release. Basically, I am taking a time release brand name Oxycontin and the Oxycodone (no ER) for breakthru when the Oxycontin is not sufficient and the pain breaks thru. I take the Oxycodone usually 4 times a day in addition to the brand name time release Oxycontin. Kinda confusing. Just seems like you are not getting enough pain med to at least give you some relief. Have you tried Ambien CR for sleep;? Once the Ambien CR wears off, my pain breaks thru and wakes me up. I do not lay down during the day because it is too painful. I wil sit in a recliner; but with throw pillows for my feet rather than the piece that extends from the recliner. Again, can only sit for a short time; but laying down during the day is out. I do take vallium a couple of tmes a day with my Oxycodone. This helps, not only for anxiety; but muscle pain. I do find this helps somewhat has well. It is sad to know this is not the life we signed up for; but what we have to make the best of with whatever meds or means to get us thru each day. I still do laundry and my cookiing not as good as it use to; but know I need to keep moving as much as possible. Without the pain meds not sure what I would do. Really rough. I wish I could be of more help.


(Gerry)

I take all of my meds at night because during the day the kids r with me . and I might have to drive. but what I'm realizing is I am more alert when ont the oxycodone then when just dealing with the pain itself. Lately with my wife being
layer off and home I do get to take the pain killer earlier. but I have also been doubling up a lot this week, I don't know what has happened to make it this much worse. even my back issues are cranking up the volume, and my wrists are giving out painfully. I "do" see the sun through this but it seem at points unreachable. it doesn't stop the trek though. I will always trek on. just some times slower. I carry the poem "foot prints" with me every where to remind me. thank you all for your support. it gives me a stronger belief in that poem..

Hey,

You took the words right out of my mouth with how u r feeling,,,,I am grieving all I have lost and afraid of the future,
Hopefully we can meet soon, I don't think aug meeting will work for me but after that I am good."misery loves company! Looking. Forward to meeting u

Debbie