FED UP!! With Doctors and medical staff not understanding pian!!!
 

I know I posted this in the chronic pain forum but I still felt let screaming from frustration!!! I'm sure all you crps/rsd brothers and sister will relate!


Grr. Ok I'm am ranting a little but I am so fed UP! I truly wish they could feel what I do, and then be asked to wait for different medication. But you can only get the medication if you get an appt with your PCP. Who has been on vaca for the last 2weeks, and is booked solid for the next coming week!!!!

I had a bad reaction to Lyrica. Though it did help with the pain, at least to the point where I could tolerate the pain a LOT better, I couldn't very well keep vomiting and being so fatigued that I felt I would fall asleep standing up.
The other doc I saw at my Doc's office Friday said he wanted to wait before giving me anything else for pain until the Lyrica was out of my syst6em. This made me nervous but I understand why he did, it made sense not to make anything worse! I had a LOT of pain this weekend, but I managed.

Even when I HAD to clean house because no one had actually mopped the kitchen or bathroom since before I started having these problems. Oh they spot mopped and swept but I guess no one else knows how to use it. I was also caring for my youngest daughter as she had come down with strep and i was up 5-6 times a night caring for her (she's only 7).

SO I was seen Friday for medication reactions and was told to stop taking the Lyrica. And To call back and get a appt today so I could start Cymbalta. So all weekend I dealt with it, only having Amitriptyline at night which doesn't do much as far as I'm concerned but dies help me sleep a little or at least STAY asleep once I can fall asleep....

I call today and guess what NO appt available.....I would have to wait till Friday or next week before I could be seen to get the medications.....

I seriously wish they could feel what I feel and then be put through all of this and told to "wait". The funny thing is I'm not even asking for "controlled substances" just for now at least the Cymbalta.....

Though I am extremely hesitant to try it based on the reactions I've had to Gabapentin and Lyrica. I mean yes they did help with the pain a bit but the Side effects were SO hellacious I could barely function. I feel like I either have to be in EXTREME pain or a pretty painful and vomiting or feeling like sleeping for 3days straight or losing hair or being so weak from the vomiting/fatigue you can barley tolerate standing......not to mention you work Full Time for not much over min wage so you need ALL 6the hours you can get to care for you kids, then your supposed to come home cook dinner and clean house all while finding the energy and strength to smile and read to your sweet 7 yr old. And I have been trying to hide the pain I'm in from her, so she doesn't feel scared.....

I really wish they could understand more so they would try and DO something about it!!!! I mean I feel like I tolerate the lion's share of the pain on the medications, and then when I can't take it or have to stop the meds the pain starts going through the roof!! I know it won't kill me but aren't I supposed to be allowed better quality of life???? Isn't that why we go to the doctors??? To get better? And to all those "junkies out there who faked illness/injury to get "controlled substance" drugs GO JUMP OFF A BRIDGE!! Thanks to you people chronic pain sufferers like myself have to go through every "new" medication or treatments that have horrendous side effects before they will prescribe strong enough pain/narcotics, to actually help you not want to cry from the pain!!! I am starting to see why people woth chronic pain get depressed!!

When doctors look at you odd because you are trying to tell them what you are getting isn't strong enough or you can not tolerate the side effects, and think you might be a "drug seeker". Well in this case YES I AM SEEKING IT, you feel like screaming at them to HELP ME and make the PAIN STOP. But you don't on fear of having what little medication you have be taken away, or being labeled as an abuser. I am fed up with other people not understanding that the little thing can set off you pain. Move you finger or wrist in the wrong way, or pick up a silly cup of coffee can send your pain to such heights you're trying not to cry!!!!

But oh yes I'll wait because I HAVE to. Because you don't want the state board to question why you're prescribing a constant "controlled substance narcotic" to someone who doesn't make six figures a year. I have small but conclusive PROOF of my condition as well! SO they know it's not being "faked". I am so exhausted, hurt, frustrated, confused, and ****** off!

I know all of you can probably related to some or all of what I am saying. And I don't really have a question I just needed to get this all off my chest. I am sooo SICK of doctors thinking that it won't "kill me" so I can just WAIT!



grrrrrrrrr

Emily

I know this isn't going to feel like im helping here but you need to remember what I said about CRPS being a marathon not a sprint. You have got to try and stay calmer than this because I promise you, the only person you are hurting is you. The stress and extreme anguish you are feeling is normal at this stage in the process but I guarantee you, its making your pain countless times worse.

I do know how desperate you feel, I've been there. I spent a long time there. It's a horrific place to be and I can't tell you the magic 'answer' to getting to a better place. It's a mix of time, meds, good people, psych support, physio, distraction, exceptional determination, using my painful limbs, coping strategies, finding a new identity and ultimately some level of acceptance. I know you are not ready for most of that and are frantically looking for medication relief.

Even at this stage you need to be a bit patient. Sometimes you need to be prepared to wait for meds to start to work for you. Cymbalta has been good for me but it took time - the starter dose of 30mg was ineffective and it wasnt till i got to the max dose of 60mg that it had any effect. I know some US doctors prescribe higher doses but that is not the manufacturers recommended max dose and whilst it might work for individuals, there is no clinical trial evidence that these non-recommended doses are any more effective.

I also have to be honest and tell you that my main pain relief comes from fentanyl (which is a narcotic) at a dose that means the side effects limit my lifestyle drastically. It's that or unbearable pain - this is the reality of the only life choice I have. Raise the option of opioid medication with your doctor sooner rather than later - at least discuss the options but you will likely need to bring it up. I am lucky that in the UK we don't have any of the issues you have in the US being prescribed these drugs nor are there problems with continuous prescriptions or insurance companies refusing refills etc. I see our system being slated often on these boards but there are many things that are better than in the US, especially for people with expensive, chronic conditions.

The unfortunate thing is that nobody else can or will understand your pain - it's unique to you. Someone else with the diagnosis can try and will know how bad their pain feels to them so its easy for them to empathise. A decent medic will be sympathetic and understanding, they will be knowledgable about the condition and treatments and they will do their best to ensure you are not waiting unnecessarily for medication but that is really all they can do. I have been so frustrated and angry many times with the lack of understanding and interest from many doctors but that is something you will need to come to accept for yourself.

Doesn't your PCP have a system for emergency appointment slots? Can you access one? Find out who is really in control of getting you an appointment at your doctors office (receptionist, admin etc) and go out of your way to make a good relationship with them so that they know you are genuine and might go the extra step to get you seen. I know you are miserable but waiting a week is truly nothing in this journey but feels like a lifetime.

I think you could get a lot of positive help if you also look at other ways of managing the pain. Lots of people on the site have non-medication tricks and coping strategies that they have worked out over time to cope with their pain. I may not be able to help because I have cold CRPS - no burning pain and no heat. My temperature and pain issues are all cold so I have various things that I use to help manage that. Ultimately though when its really bad I just have to go to bed, stay still and sleep. I know it will be better for a bit after sleep.

You need to talk to your partner soon about the options for him going out to work and contributing more. He somehow needs to step up to the plate and do more. You probably also need to find an age appropriate way to talk to your daughter to try and be honest with her about how bad the pain is and why she needs to do more to help in the home. I know that you are hiding it from her and she is young but is it possible you can explain it to her in such a way that she isn't frightened but realises why things are going to need to be different for a while so she has to step up and do more to help? Do you have any family or friends you can turn to to help you out a bit? You really need some real life (ie not Internet) support and help with coping and practical help. Friends will not hesitate to rally round and won't thank you if you don't go to them! Forget the cleanining and house chores if you can't do them - I promise the world will still turn!

Above all please try and not get yourself wound into a state because it will make everything worse. The most critical thing you can do is try to stay calm and reduce stress as much as possible. Stress, especially the constant negative sort you are currently having, has massive physiological effects on the chemicals in your body and the systems that control pain signalling.

Like I said, I am not sure this will be any help to you. I don't know what else I can say except useless platitudes (not my style im afraid) and I didn't want to say nothing since you are reaching out.

Emily
I read the replies to your post in the chronic pain section and thought I should add this.

You should be careful about how your local doctors/hospital/county regards people who make repeated trips to ER complaining of pain and seeking help.

This can often be interpreted as drug seeking behaviour and that is definitely something you don't want in your medical records. ER departments do get lots of dependent drug users who are seeking drugs rather than 'genuine' pain patients who are desperate. I know your PCP has mentioned you can go the ER but I just urge you to be careful in case it presents a difficulty later in your marathon journey with CRPS. However genuine you are and regardless of having a proper diagnosis, its easy for one doctor to form a wholly different and unsubstantiated opinion of you - then it's virtually impossible to get rid of that lingering stigma. It's just another really hideous feature of how the medical profession can unfairly work against genuine, decent people.

I just urge you to be cautious and if you can, sound out the position locally to make sure you don't innocently make subsequent completely legitimate treatment harder to get.

Neurochic,


Oh I know I need to keep calm. Lately I have been much more successful in doing so. I just needed to vent a little :) One of my coping mechanisms is doing just that. It helps much more than just to keep it bottled up! You guys probably see the "worst" side other the the docs in the er just because I try and "keep it together" as much as I can. And I have talked to my daughter and have explained to her yes I do hurt but I will be okay she has been my biggest little helper and tell s me "mommy you don't have to do everything all the time" and tells me to "take breaks!"lol she has such a compassionate heart! And I don't overdo it with chores most of the time but i saw the condition of my floors and HAD to do something. Also m,y partner is having some serious medical problems as well so its not a totally easy situation for him either. He has started helping out more too....a little.
i AM trying to be patient. Though it is hard when the only medicinal help I have to Amitriptyline and Tramadol (just took my last dose:()
And I have just talked to a different doc office and am trying to find a PCP who is familiar with CRPS/RSD in hopes of raising my level of care!

The doc office I go to, I feel, is ill equipped to handle such a complex and time consuming syndrome.....

I'm glad you are coping. It's hard when we only see such a one dimensional aspect of someone's experience on here.

Looking for another doctor may well be a good thing. I hope you can find someone you feel is able to provide you with better quality care. I'm slightly surprised you are not being told to take paracetamol with the tramadol. It is a fairly standard practice (unless there is a medical reason not to) to prescribe a maximum dose of paracetamol daily with an opioid medication (1gm taken 4times a day). Although you are unlikely to feel any direct relief from the paracetamol itself, it has the effect of making the opioid drugs work more effectively so for that reason it's worth considering. It's very cheap to buy too. Something to discuss with your doctor perhaps.

I still believe strongly that there is no substitute for having people to support you in 'real life' so I hope you have friends and family on whom you can lean for real practical and emotional help.

Part of this is just you not having adjusted to your limitations yet. Long term you'll need to plan on getting cleaning help if your significant other is unable. the cost of meds and co-pays will be more causing a flare, than getting someone in to help you for an hour or two.

In the future, the time to do your floors is after you get the new meds, not before. And if you INSIST it has to be done, do a section of the floor, rest, come back and do another section, repeat...

While venting is fine, you shouldn't be getting to this state. There are many ways to reduce pain that don't include narcotics which have been discussed previously.

You will not necessarily react to Cymbalta the way you did to Lyrica. I certainly didn't.

If you can't manage the care of your daughter right now, perhaps you can ask a friend or family member to watch her for you. I used to use my son's school day to nap and rest. When I needed help, my family stepped up. Sometimes just for a few hours, sometimes for a weekend. I even gave custody to my ex for a short period. You're not doing her or yourself any favors by getting overwhelmed.

Good luck.

I'm not getting truly overwhelmed. Was just frustrated. My daughter is a good helper but sending her away would be worse. Her father is unemployed, lost his vehicle, many other problems with that anyways that I don;t really wish to delve into right now. I don;t think she being "damaged" by this. I just had a bad day is all. And was frustrated by the run around I was getting from the doctors.
And venting because there are 2 other adults besides me to clean the house! SO needless to say I was irritated lmao! I just needed to spew a little and I'm sorry if I seemed out of control, I can promise I wasn't. Like I said part of my coping mechanism is to vent. I don't feel that extreme all the time. Though certainly frustrated still a little, but I know it's just part of the deal!


Thanks to all who listened!

just sent the following email to my wife and docs, no reason not to go public
 

Was driving to an appt. w/ Dr. Richeimer and realized I was impaired before I got to the bottom of [my street], turned around and came home. Whereupon I called USC to reschedule my appointment and am calling [my psychiatrist's] office now in order to discuss my medications and find out what God's friggin name is going on with the delivery of the tDCS device. Assume it's just a transient (I) being off the tDSC (2) lack of sleep and (3) the interaction of dextromethorphone HBr (DM) with all my other meds.

FY

Mike

i hear ya Michael
 

Gotta LOVE those days right? I told my doctor,who finally admitted he doesn't know how to treat this, that I feel like I either can choose to be in immense pain, or moderate pain with a whole bunch of hellacious side effects......blah

That is exactly the life choice that many of us have had to make. Whichever you choose, CRPS is a truly life changing condition.

Its a hard choice, but I think thats a choice we all have to make in all of this. I decided 3yrs ago that I was not going to suffer anymore and I was going to start meds, and then i decided last year that I needed to start heavy meds that I would have liked to of waited on, but again I decided that managing my pain was best and ill keep doing that. TOS and RSD have been life changing for me and ill just keep adapting and finding my limits as my body keeps changing good and bad.

Hello there fellow washington rsd friend, holy crap right? It gets old fast. Ive been through the ringer doctor wise and i was born with rsd and diagnosed at 12 they thought it was growing pains.... anyways im now 28 and after my child was born in 2011 i jsut carried the pain with me which was probably easier for me since ive just never not known a life without it. But my good news is that i have finally found an amazing doctor. Hes in olympia if you ever move this way. He is always trying to help and find new meds we started with the basics lyrica,cymbalta,gabapentin,amitriptilyn,and about 10 others including vicodin and tramodol and ive finally settled with 7.5mg percocet and 25mg fentanyl patch and my doc even changed that today due to it not working how well it should to 5mg percocet which is like a 500mg but without the asprin cause ill be on it for a long time and we want as little liver damage as possiable and 50mg patch. He always asks me what the rsd community is talking about that how we decided on fentanyl patches cause i let him know a lot of people say it works well. Im his first rsd patient and hes not a new doctor and when he said that i asked him "do you feel comfertable treating me?" He said yes. He felt he could help me. Ive been sent to pain mgmt 2 times and he didnt like what they put me on or that they treated me disrespectfully by not immedetly calling me back when the meds they put me on didnt work so we decided that he would just treat me until we found a specialist that knew what they were doing with this deases. What im saying in a long way is there are some good ones out there. Have you asked ur doc yet if even wants to treat you? It does sound like your road will be long still it has taken me almost 2 years to get my pain to a managable point. I have a 17m old so boy do i feel for you. You really need to stress quality of life to your doc, you never know maybe he really hasnt thought about it. We are all only human but its your job to really paint a picture of yhour everyday life living with rsd. Do a journal and read it to him when you go in that might help. Much love

finding a doctor/practice that are the full package is the holy grail as far as I'm concerned

I moved house last year and my new doctor managed a diagnosis recently so well done to him there but when he says 'come back in six weeks and we'll see where we are with it then?' I'm gobsmacked and consequently will be phoning them to speak to another doctor tomorrow morning

it's a sickening fact that 9.7/10 doctors actually don't want to help you - I've seen so many it took 2 years just to get the diagnosis and on top of that lets not forget how they condescend and think it's all in your head

it's not just us RSD patients either they just want anyone that needs to discuss pain relief out of their office ASAP

CRPSsongbird I relate to much of what you said we're all thinking like that sometimes or even all the time. I'm glad you have family around that's a huge thing to have and your daughter sounds like an angel giving you advice on how not to feel worse

what I would say it imagine if there was no one else there with you all the time - it would be much worse

Neurochic's first post on this topic is A++ advice and would prove useful to anyone that's feels like reaching out for help, I'm also in the UK and I swear no one's heard of CRPS apart from this one doctor

keep :):):)

i so wish i could post the voicw mail from my doctor! im with u here they dont listen so well

I'm guessing they ticked you off?? lol I would like it if they could just live ONE day in our shoes...then we'd see how fast they pull out the pain prescriptions! lmao

songbird did the nerve block help you

Not really. AS soon as the sedative wore off the pain started coming back slowly.

Hi songbird
 

I am so sorry you hurt that much. Anyone with cronic pain understands your situation. You can vent here all you need to and there will be people who will understand. I know of several others who could not get into see their physicians. Cymbalta for RSD or CRPS is worth looking up on the internet to see if it is effective. Have you kept a journal to show your doctor about what you are going through? Sometimes the doctor needs to know just how bad it gets. The squeeky wheels get the oil. Express all your concerns, and tell him just how hard this has been, with trying to raise a child etc. I hope you get the help you need. Go to the ER if you have to. I go upset enough to do that very thing with another painful condition, and I was not ignored. I wish you all the best, and less pain today. ginnie:hug:

i asked the dr to look at the american rsd site under meds to help manage pain...he responded in the vm that the fentyl patch and other narcotics do not have enough info on effects good or bad and neither does anything else....he thinks the birth control pills messing hormones up is cauing the crps to get worse. the muscles spasms are severe some lasting an hour. i have slept 15 hrs total since last friday when i woke at 6 am. stepping down on prednisone now at 9mg a day, stopped bc and still have hydrocodone 5/500 had it on board for 11 yrs from back injury. i cant get any good pain relief and im tired of it!

could you list everything you've tried please?

where to start.... the intial injury they said was tendonitis both arms. so pt was started with the mega burning pain i lived with both arms wrapped in ice starting in sept 2011. pt made exos braces for both arms the did night time elbow splints to keep arms straight. pain meds from sept 2011 to jan 2012 were hydro 5/500 1 or 2 every 4-6 hrs and motrin. then saw nurologist jan 2012 she need nerve conduction tests omg horrible i had a bruise from jan to june not good. she wanted to try gabapentin so we did that thru may. in beginning of may she added clonidine to the mix that wasnt good i became very suicidal still in huge pain in june i saw a pm dr the same one i see for my back. he thinkss meds can control some pain could do the block but fears it may come back into left arm if he did so not a good choice. also saw a dr for prosthctics he made bio sleeves for me....good choice. one most days i can wear the sleeve and it keeps arm warm and all. went to missouri end of july into august. very lil pain took pain meds for drive down n back nothing else. been on and off predisone since june. gained 40 lbs on this. not good with back injury. use lidocaine ointment as neded now and taking 9mg predisone and 5/500 hydro as needed and have back up flexeril but nothing really workd takes edge off is all if it even does that. for give this spelling one handed isnt easy

I now more than ever see the need in finding a great pain mgmt doctor. I was very lucky when my ortho doctor gave me a referral to my pain doctor who is an anesthesiologist. He seems to me to be on top of everything, and after my nerve blocks he reminds me that one of the office dr,s will be on call alll night. And the next day one of the nurses always calls me to check in with me and see how I am feeling. If anyone needs a doctor in central florida let me know.

Bye, kim