spilling my guts
 

. I tire of crying , I'm physically tire of this pain and lack of sleep. I am riddled with guilt to what this is doing to my wife and kids. Im afraid of the direction this is going, worse and worse. Im tired of no results , of no real forward motion in my treatment. I sit and watch as my life passes me by while I cry and writher in pain. this beast also interferes with the lives of my wife and kids as each day they try to plan out can change as quick as a flash of lightning. I also am losing my ability to control my reactions to the pain I feel. I and crying in pain all the time , the pain shows more in my facial expressions causing my wife and kids unease. also my friends are affected when they come to visit with my family. It causes discomfort among them as they do not know how to react.
I am alive and I "am" grateful for this but I wish i could regain some ability to hide what I feel, pain,emotion. I am saddened of course, I'm angry almost all the time lately . aside from my pain. I get uo and push myself to walk and "do" things. but It is getting harder and harder to push through the pain and the pain is spreading.my hands are becoming harder to use as well. my wrists are giving in between the pain and weekness with is beaching more prominent it is making using my canes and walker more and more difficult. the burning ,electrifying pain in my legs and my belly , back and other below the waste areas, its scaring me . losing my legs completely takes away a lot of my aspirations. I cannot dance now as it is but I wish to still dance with my dghtr at her sixteenth birthday, walk her down the isle and dance with her when she decides to get married. Ive already lost the ability to play sports with my boys, to do the work around the house in which should be done by me if it weren't for this beast. I tire of trying to get treatment I need but insurance denies it , or agrees to partial... Am I weak ? I believe I am strong willed but "today" I know RSD is kicking my ****. I just hope I can pick it back up and fight again.. thanks for listening

I wish I could reach out and "hug" you. I "feel" your pain, your frustration, and perhaps your fear of what your life is becoming. I have to believe that someday we will all get the help we need to improve our pain levels. Don't give up looking for answers to your pain.

Question- have you tried tdcs yet? It's not expensive ($300) and seems to give some people some relief. I would try absolutely everything that is available.

I have often wondered what I will do as my disease progresses (which it is doing but not to the extent many of you are experiencing). I have talked to someone who is in tremendous pain from a neck injury and lymes meningitis (treated). She has spoken to her M.D. about medical marijuana. It is still not legal in our state for medicinal uses but her M.D. said that once it is legalized, she will prescribe it for patients who are in quite a bit of pain. The woman with the neck injury couldn't wait for the day that marijuana is legal and has found it on her own. She uses it in a variety of ways- smoking, in tea, etc. and has found great relief from it. I'm not saying this or tdcs is the way to go but once I reach her pain level, I'm not closing any doors.

Realize your family loves you and are accepting you as you are. They are probably feeling as helpless as you feel and don't want you in this position. Speaking from my heart, if my loved one had the pain you are feeling, I would feel better by trying to help you however I could. Ask yfor their help whenever you can and know that they will probably feel good to do something for you. I know many of us don't want to burden others but I believe it will help those around us to not feel as if they are also helpless to help us.

I see you are from New York. Perhaps you could speak with your state senator or representative about the difficulties you are experiencing with your insurance company. The New York Attorney General successfully sued a number of insurance companies for failure to adequately pay out-of-network fees to their customers. I think I would fight my insurance company with everything I had left.

My pm put me on Tizanidine for muscle spasms. I take one at night and within 30", I'm out. Getting enough sleep is important for dealing with anything. I suggest you talk to a doctor or psych about your current status. Someone suggested anti-depressants and it's important to find the right one or combination. I think a complete review of your medications is in order.

Hang in there. There has to be better days ahead for all of us.

I have a history of addiction in my family and Refused strong pain meds for years. Finally, when I was at a low point, my doc gave me a new script without warning of what he was giving me. I filled it and my misery was for the most part, removed. Was it a miracle cure? No. But, it allowed enough reduction for blocks of time that I no longer felt as if I was being tortured 24/7. It was a changing point in starting to heal my relationship with my then teenage son. Not getting adequate sleep is another major issue.

There are meds available that may help. There are others that will make you feel like a zombie. Until you work with a doc (it can take years to try all the combos at various dosages) to get relief, you just can't know what will work for you.

Has WC sent you for a psych eval with a pain psychologist yet? That was another big help for me...

I have an amazing relationship with my son today. It took him years to trust me again though. He can depend on me for emotional support once again. Growing up with a parent that cries constantly, and is withdrawn emotionally due to pain, is not an easy thing.

There are so many small ways you can improve your life, but accepting your new limitations is something that you must confront. Again, having someone to work through this issues with, is really helpful.

I can't stress enough that you need a good antidepressent when dealing with this monster. It will help with how you feel as well as sleeping.

I still deal with some depression and bouts of crying but not like when I was at where you are now.

Today I deal with the sarcastic remarks from my husband that I need to get up and go get a job. Or that he is tired of working and wants to retire. I feel so guilty it is unreal.

I have tried to get a job, but with no avail. (not to mention, I will need to take off about 10 or more days just in dr.'s visits.)

The dilemina. Any who, don't freet on the future you do not know what it holds. Only GOD knows. Focus on today and try to do something that you havent done. Find a hobby or something to keep you occupied. :hug:

I just wanted to pop in and say that I am sorry to hear that you are having such a rough time lately. I've been there and I know how you feel. Last year when I had spread and it literally seemed like everyday there was something new wrong or worse it was very hard to stay positive. My brain kept saying there was hope, still new things to try, new docs to see, etc...but that frustrating sense of hopelessness kept trying to wiggle its way in. I put a lot of faith in one doctor's visit that I waited months for and when it went badly (or I should say not as expected and turned out to be a waste of time) I think that was my lowest moment. I shut myself away in a dark room for a day. My boyfriend told me I got ONE day to feel like crap and then it was time to pick myself up again. It helped.

Mostly I had to reassess the big picture and what I wanted for myself and the best way to get there. This forced me to make some hard decisions and I had to come to accept some things about how my life was changing. Didn't mean I had to stop fighting...I wasn't giving up...but I had to learn to live with the idea that things might not get any better and learn to live with the way things were right in that moment. I also had to focus on the importance of my mental health. I never saw a psych or anything...seems I was able to work through this on my own...but don't underestimate the value of help sorting all of ths out. Sometimes making decisions that will improve your mental health go against what we "want" but overall lead to better quality of life.

The kicker of course is that what is best for you in this situation may not be what is best for everyone else with RSD. You really need to look inside yourself for those answers about what is best for you overall. Look at the things that are causing you stress...things that are your triggers...and see what you can do to remove or change them. Think about things that make you happy or that help you relax and try to add more of those things into your life.

You can make it through this. Please reach out to family, friends, doctors, lawyers, etc to help you through this and to help you achieve what you need for better quality of life and to make things better overall for you. Remember that it is YOUR life, YOUR health, and YOU make the decisions about what is best for you. I know it doesn't feel like it most of the time when you have RSD...but we do have control of many things in our life and the power to make things better for ourselves.

Sorry to ramble on...hope tomorrow is better...always better...

I wanted to say thank you all for the reach out.. I have been to see two pain management shrinks.. and believe it or not they say I am mentally sound. and there is nothing they see that they can help with. If they really looked they would know Im frickn NUTS. but sanity is really for the crazy people.
I wish I could say Im out of my funk. but I will not insult you all or myself to lie. Im not. ! Im very angry!!! frustrated and I feel trapped. which is very bad for some one like me..I always had anger in me just learned control over it. unfortunately control over showing most of my emotions as well.I did see pain management today and he is taking me off amytryptiline (elavil) and putting me on trazadone...I haven't learned about this drug yet but he said it should still help with some pain but it is changed in hopes to get me some sleep. and he is upping the lyrics. with isn't doing anything for me now. I don't know what upping it will do but gotta try right.. the stress is comp. comp. comp. deny this pay for part of that no more this hearing for that. IME for this . its nerve wracking, confusing, and I lose my positioning. I need a personal gps now.
..I appreciate the words of advice.. its all familiar to me.. lol ohh Ive given that advice before lol..... proof that its easier to show the path than follow it.. so to all that get lost it common amongst us all. Sorry I have to laugh at myself. not the situation. again thank you for your support and helping me find my perspective again.. this is why I call this site my life saver. be well all

wc is truly a pain in the butt. I have been dealing with them since 09 and it just doesn't get any better. They pay for some of my meds while my private insurance pays for the others. (needless to say the pharmacy gets it wrong every month) Try not to let them get the best of you

No mental disorder is required to work with a pain psych doc. They're supposed to give you additional tools to work with an extraordinary illness. :confused:

HA!!!!!! that is a funny thing.. I guess the dr missed that memo.. it would make it easier if I had other choices or more tools.... but I think I ill bill comp for all of you instead. this is by far the best tool i could have asked for. No judgements here. just real people with real experience who are genuinely rooting for me.. "THANK YOU" from the deeper part of my heart... a hug to all of you:group hug:. ..Right now I will concentrate on tomorrows court hearing .. please pray for me and a positive out come on my behalf .. . ..

will send a prayer your way.:smileypray:

ok figure this out.. my employers comp carrier requested a hearing to make sure they were paying me enough????? doesn't make sense.
also my atty was on vacation and I got some yokel Ive never met before. I was told by my atty,s office that this guy was fully up to date on my case. as I shared my fear with their office. they said he was good and knows whats going on with me.. so I go in with my wife and kids(unfortunately sitter got whooping cough) and the atty fill in came up to me and said" why are we here today" I said I don't know carrier requested this hearing. he said " no problem.. did you bring your medical records".. hello I spend so much time and moony out of my pocket to make sure all of my attys have my complete medical history and record.so we go into hearing and all of a sudden my atty is speaking and answering (someones ) question. all i see in the room is my wife. my "atty", the court recorder typing dude whtevr.. but i hear a woman's voice. so I ask whats going on. and "MY"atty tell me to shut up... ok real fun now . then I hear another voice. and low and behold I notice the TV. it had a man in it. apparently I was in a video conference /hearing. never saw that one coming.. so I wanted to know what was going on. and this guy who said is representing me said shut up again. to me and my wife, ok I've had it now. I said I wanted to understand now.. so he started to explain but only a little.. by this time I am so angry and confused and in tons of pain(with pain level is raising with my anger) I didn't expect that. by the time my 5 minutes of a hearing was up. I nearly passed out. some one had to catch me before I fell over..instant tears came to my yes because of the pain. finally he did what he called his best to explain that what ever happens in this that I will only come out the winner.
OK still don't understand why an insurance carrier would intentionally put themselves out on a limb to .. do the RIGHT thing.. all those covered under comp. I'm sure you understand. so now Im scratching my head. in regards to carrier.. and really ****** regarding atty. I can't wait till my atty gets back from vacation.. this guy will NOT represent me again... whooooo! that was a lot to get off my chest. thanx all.. AGAIN!!!! lol

If they've been underpaying there could be massive penalties depending on your state's WC laws. The sooner it was addressed, the less money they'd owe. Just a possibility.

I am not sure of why your wc carrier would request a hearing either. Sounds like you went through the mill today though. I am sorry you had to go through this. I would of been upset myself.

Do I understand correctly; you are only on trazadone and Lyrica for all this pain????

Some years ago, because elavil made me groggy in the a.m., the doctor I was seeing for pain, at that time, put me on trazadone.(trazadone does not make you as groggy in the a.m.) My primary care doctor had given me some blood work and was concerned about my low white blood cell count. I read up side effects of trazadone and one of them was "low white blood cell count". I asked my primary doctor not to do testing and I would ask the pain doctor to discontinue the trazadone and put me back on Elavil. My blood cell count returned to normal. Also another side effect that had worsened for me since being on that med, was additional agitation, irritability, anxiety, hostibility, etc. I know all meds have side effects; but these were too much for me to ignore.

I have since had additional surgery spine, peripheral neuropathy. Much cronic pain and am going to a different Pain management. I do not like taking the narcotics; but without them, I would not get thru each day. They do not remove all the pain; but at least can have some sort of life. When in severe chronic pain, you are not addicted; but dependent on them to control the pain.
For sleep, I now use Ambien CR. I at least get 6 hrs. of sleep with no pain. The regular Ambien did not work long enough and had to go up to the Ambien CR to get a good 6 hrs. sleep.

Lyrica worsened my pain. Many on Neuro Talk have had their Lyrica discontinued because of insufficient help with their pain and in many instances, as in mine, increasing the pain.

I sure hope you are getting better Pain management than just these two meds which are not sufficient for the pain you describe. Proper Pain Management can at least make your life more bearable. You will not be able to do the things you did in the past; but at least lead a life with less pain, thereby making you a better person to be around.

So sorry about all this going on with the attorney, insurance problems.

(Gerry)

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. :rolleyes:

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.
:hug:

Vrae,
 

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?

Painman,
 

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. :hug:

painman,
 

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..

Knowing He is carrying you when there are only "one " set of prints is a gift only God can give. Hold on dear friend.

(Gerry)

Hi
 

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

what a truthful and unfortunate saying. misery "does" love company. I too look forward to meeting you as well. I have heard much about you from junes meeting. I would like to meet the person with your courage and will.