Haven’t been officially diagnosed yet w/ CRPS

It is possible, I'm sorry to report.

I'm a nurse with full-body CRPS, resulting from a knee sprain and subsequent surgery 3 years ago.

Can you tell us a bit about what sorts of medications you're currently on, supplements as well? Sure sounds like a loooong time to wait to see pain management, and in CRPS, best practice is to begin treating pain right away, even before formal diagnosis.

How is your relationship with your primary physician? Is he/she in the mix when it comes to treating your pain, or has this been just an ortho thing up until now?

Folks on this forum have collective experience that can help you get through this in many different ways, so share what you feel comfortable sharing right now, and I guarantee your fellow CRPSers will roll up their sleeves and go into think-tank mode.

You are not alone

Hi,

I wasn't diagnosed until almost 3 years after a trip and fall at work.

Didn't even know what CRPS was.

I was diagnosed by an orthopedic surgeon and his first comment was that he would never do surgery as it would do more harm than good.

Sounds like you have it, we can relate to what will be pain, frustration but always hope that there someday be a cure.

What's happening to you in general is not unusual in any way for someone who has just been diagnosed with CRPS or has the signs and symptoms, but is awaiting a diagnosis.

That is to say, you feel like this is a hair-on-fire situation because things are getting worse instead of better over time, your pain etc. is interfering in your ability to function out there in the world, your friends and family try to understand, but most if not all get frustrated because they have a hard time wrapping their brains around the fact that it's been so long since your original injury and yet you are still in severe pain.

When I was a work comp nurse case manager, one of my patients with CRPS put it this way: "My family used to be sympathetic. Then they got impatient. Now it seems like most of them don't even want to talk about it anymore".

I bet along about now you're noticing that emotional upset just makes your pain worse, and severe pain makes symptoms like anxiety and depression worse. That's just CRPS for you.

And it's unfortunate but pretty classic that until you get in to see the pain specialist, nobody wants to do nada in the way of medicating you for pain.  CRPS is kind of the medical equivalent of that kid's game, Hot Potato; a lot of physicians and other healthcare practitioners just pass the buck, er, potato...

I can give you a list of things that I have found helpful, and I'm sure others on the forum will put in their 2 cents' worth as well. I'm not a doctor, just a nurse, so this isn't like doctor's orders, just more or less a laundry list of stuff that is pretty cheap and unless you have an allergy or sensitivity to it, also pretty harmless.

First off, I have to tell you that at this point in your illness, what the pain doc is going to be concentrating on is managing your pain for maximum function and quality of life. He can't "fix" what's wrong, but he can probably help you to be more comfortable. If you had to get CRPS in the scheme of things, now is not a terrible time to do it, at least compared to any previous time in history because there is an amazing amount of research being done on CRPS and related conditions like Fibromyalgia and other neuropathic pain conditions that all pretty much affect the nervous system in the same dysfunctional ways.

You will be hearing a lot more about treating CRPS with stuff like IVIg (look it up), prednisone, and other drugs that don't directly relieve pain but instead, act on inflammation and the body's own dysfunctional immune response.

But down to brass tacks, here in the now:

In terms of prescription drugs, all other things being equal, I would advise you not to start taking narcotics if you can possibly avoid them, because there is the dependency/addiction/abuse angle with these meds and it's getting harder and harder to find prescribers because of the tightening of regulations around this class of drugs.

Also, narcotics are not typically that effective for neuropathic (that distinct burning) pain.

Neurontin(gabapentin) is an older, off-patent drug (read: Cheap) medication that treats the pain of neuropathy better than most other pain medications do. You need a prescription (you could call your primary doc and ask him/her about trialing this med), but if you print up an online coupon from one of those discount pharmacy places, it's less than 20 dollars per month. Sounds like you are still working, good for you! But if you are also still driving, gabapentin can make you dizzy, especially when you first start taking it, so once again, talk to your doctor.

Believe it or not, there are a lot of over the counter (OTC) medications that some CRPS patients find to be in the range of really helpful, all the way down to not so much. I think it's going to turn out to be that the folks that have the worst inflammation respond better to much of this stuff. You'll recognize the names because we commonly use these things to treat the symptoms of colds and flu infections, and allergies:

Benadryl (diphenhydramine). Cheap as dirt, has the side effect of making you drowsy, so great at bedtime but not so much if you need to be awake/alert. Helps to reduce inflammation by targeting histamines, the chemical signals your body puts out when it's under attack by allergens, etc.. Histamines make your tissues turn red and swell up; including your sinuses and some of your internal organs as well. If you can reduce inflammation, you reduce pain too; just not directly...more like, thru the back door

Pepcid and Claritin are in the same drug class as Benadryl, and work to reduce inflammation and therefore, pain, in the same way. There are lots of knock-off brands of these medications called histamine blockers, that are much cheaper than the brand names. One thing to watch: If you are buying any medication that is being marketed for cold and flu symptoms, beware of anything that says "non-drowsy". It's not unusual for OTC cold and flu products to contain 2 or more medications in combo, with one of them being something like ephedrine, or any other med that ends in -rine. CRPS need those meds like a hole in the head; instead of making you drowsy or just being neutral in that way, non-drowsy meds can hop you up; make your heart beat faster, because they rev up your body's "fight or flight" response, and we already have that in spades anyhow!

Vitamin C. Find one that's sugar-free, and hopefully time-release. Around here there's a brand called Ester C, but you may need to do a bit of detective work or ask a pharmacist. I take 3-4 thousand milligrams a day, because there are medical journal articles that say vitamin C helps to reduce inflammation and boost immune response. I do notice a difference in how I feel if I forget to take it on a given day, too, for what that's worth.

I have found that the OTC product that is the generic for Mucinex is really helpful in several ways. It has 30 mg Dextromethorphan and 600 mg Guaifenesin, the ingredients you often see in cough and cold meds. I take the tablets because there's no sugar, corn syrup or artificial colors in there; the liquids are usually pretty loaded with additives that no CRPS sufferer needs to put into the mix. Anyhow, the Dextromethorphan is a mild pain reliever; by itself it wouldn't be adequate to treat neuropathic pain, but if you are taking gabapentin or even just OTC pain relievers like Motrin or Aleve (as long as no allergy to these, and once again, check out all this stuff with your doctor's office; just give them a call and run it by them), the dextromethorphan takes an additional edge off your discomfort. The guaifenesin stimulates your "rest and regenerate" nervous system, which CRPS sufferers can definitely use. It is typically used as an expectorant, meaning helps you cough up gak when you have a cold or the flu, but we can take advantage of the rest and regenerate side effect. It helps to drink at least 8 fluid oz water or another non-caffeinated beverage with this med, because otherwise it will dry out your mouth and tongue, and sort of coat them with a layer of gakky stuff over time.

Some of us also need to medicate for either diarrhea or constipation at times, and there are various OTC products for this as well, ofcourse.

If you have problems with muscle cramps, OTC magnesium and calcium are cheap as dirt, and can really help with this. Just remember to take calcium with a food or beverage that has protein and is a bit acidic (yogurt works well, or a salad with vineagar and oil and some kind of protein like chicken or cheese, egg, etc.) for best absorption by your digestive system.

Just a note on Tylenol: Some CRPSers take this on occasion; I have, a few times myself. But Tylenol has some problems: It doesn't relieve inflammation the way Aleve and Motrin do, and there is some pretty good evidence in the medical journals that taking more than 3000mg per day can permanently damage your liver. But the sneakiest thing about Tylenol is that it is often in combo with other cold and flu medications in both liquid and tablet forms, so read, read, read those labels. It's a huge thing that people don't even know they're taking all this Tylenol, they think they're just treating their cough or congestion or what-have-you.

Hope some of this helps. You need to do a little detective work, because the best advocate in your pain management and treatment plan overall, is ALWAYS you; for pain patients in general, there is this dance we all do, where we want to control symptoms as much as possible, but there's this fine line where if we take more pain meds, they really interfere with our functioning in daily life (AKA: The stuff that makes life worth living). And that line is in a different place for each one of us, for a thousand different reasons; and as time goes by, the line actually changes for any given one of us as well.

I, for instance, often choose to experience pain at up to a 6-7 on 10-scale for a couple hours each day, just so I can cook. I like to cook and bake; it's a creative outlet for me.  Afterward, I take a gabapentin and a dextromethorphan tablet, and I crash in my dark bedroom for a couple hours, feeling like I accomplished something that enriches my life, and my husband's and neighbors/family member's lives... As they are all cookie and cake hounds. For somebody else, this might not be a good balance, but it works for me.

Let us know how things are going for you, and if you have any questions we may be able to help with. We are here!

Hi

I am so sorry to hear of your problem - it is so frustrating that it has taken so long for you to get a diagnosis.  My story and what I found has helped so far.  I developed CRPS following ankle surgery in May 17.  The only positive was that the orthopaedics doc diagnosed my CRPS within 6 weeks and referred me to pain management and Physiotherapy. Physiotherapy wise I hit the jack pot and have been working with a great physiotherapist for the last year - it is vital that you find a Physiotherapist who knows about CRPS - and knows what to do and more importantly what to avoid and who will listen to you when things become too painful.  I have made progress with physiotherapy as in I can now put my foot flat on the floor - but unlike normal recovery and physiotherapy- progress with CRPS is in minuscule increments.  My physio regularly measures my progress so when I get despondent - and you will - he can cheer me on with what progress has been made.  Now to the bad bit.... you need to fight the system through whatever means to get seen sooner by pain management.  Like you I was told there would be a long wait for an appointment - i.e. referred in June  2017 and was also told January 2018.  Having done some research on CRPS by then I was not prepared to wait... I am in the UK so complained via the PALS system - and amazingly I then got offered an appointment in August 2017 - it was in another nearby city - but I took the appointment anyway as I was desperate.  I really got lucky with the pain management doctor - who when I first walked in went from asking why I was still on crutches - to which I replied I have CRPS - he then took one look at my foot/leg and freaked out - asking "how long has it been like this?'.. 'and this needs treating immediately and aggressively" - so I was glad that point that I had pushed for an earlier appointment.  Unfortunately - the treatments we tried had no affect.  Treatments were drugs and four spinal blocks (one a week).  I was really hoping the spinal blocks would work as my CRPS was spreading rapidly up my leg - like you mentioned the red rash - this is usually along with the spread of the pain, - one of the first signs of my spreads.   My pain doctor was quick to pass me along to a new specialist after the last spinal block.  This is were it all got real and scary.  At my first appointment with the new pain specialist  - I thought I would be offered yet more drugs - the talk turned to spinal cord stimulation.  There is a trial in the UK at the moment - looking into if SCS should be offered to patients with CRPS earlier rather than later, as research has revealed that the sooner SCS is received the better the outcome.  I left the appointment armed with info and some web sites to look into.  Fast forward to February - I attended a rather long appointment with a specialist nurse who talked me through absolutely everything with SCS, showed me the equipment etc and answered all my questions and there were a lot!  At no time was I under any pressure to agree.  I had long discussions with my teenage son - who was at that stage keener than I was to sign up for the procedure.  Obviously SCS is a treatment and not a cure so I felt it important that my son understood this.  I did agree to the procedure as at this point with no drugs helping, and the CRPS now approaching my thigh I knew I was running out options.  I had my trial and it went well and although I was nervous on the day - as you are only sedated for the procedure - it felt no worse that the spinal blocks.  I am now 5-6 weeks post full implant.  And although the post procedure restrictions are limiting - i.e. no bending, stretching, lifting etc for 8-12 weeks.  my spinal cord stimulator has reduced my pain levels to about a 6/10 and I have managed a full 5-6 sleep with no interruptions and my spasms have stopped.  This for me is a major biggie as my spasms were ruining my life and sleep, and would go on for anything between 2 and 6 hours. I am still on pain killers etc but am hoping to reduce the amount I take over the next year as I settle into the new tool in my tool box.  

Sabrina puts it well - the pain doctors cannot 'fix' the CRPS - but hopefully you can get some treatments that help.  I call mine the tools in my tool box! which is also a good descriptor for family and friends to understand.  Like Sabrina I would also advocate you trying vitamins etc.  I take loads of Vitamin C, especially before any procedure, dentist trip etc... anything to support my immune system as CRPS wrecks havoc with the immune system.  I also take Vitamin D and calcium to try and slow down the effects of CRPS on my bones.  I am also following a gluten free diet - trying to avoid anything that could increase inflammation in my body.  

So my advice - besides the vitamins/diet etc...

- You need to push to be seen earlier by the pain specialist - delays with CRPS is not an option - you need to get 

   on to some kind of treatment ASAP.

- Be open to trying what they decide - e.g.,  the spinal blocks and/or SCS.  I am not brave at all when it comes to 

  procedures but CRPS makes you desperate. 

- You need to find a decent physiotherapist, and start working with them ASAP....but they need to know about

    CRPS and do the right treatments, no force, no ice, gentle encouragement to make the most of the movement

   you have, knowing when to stop below your pain levels etc.  With CRPS it has to be below the pain threshold

   when you stop the sessions or it just fuels the cycle.

- Find a GP that you trust and who will listen to you with regard to your CRPS.  This is vital - they can be helpful

  in helping you access help in the wider community - for example by October 2017, I had been assessed by the

  OT department and given a bath seat and a wheelchair.  Both really helpful in managing my life.  Although baths   are still tricky due to my sensitivity and water - I am more stable and importantly independent with the bath seat.    Also the wheelchair - great for those trips to town where there is limited parking near the high street and for winter.  Crutches and ice are not great together.

I also researched and found the CRPS unit in Bath - and asked my GP to refer me there.  Once again a bit of a push etc - but if you don't fight for yourself with regard to the medical world no one else will.  Anyway I have now been to Bath and been assessed by their specialists and am due to attend their two week inpatient programme in October, once I have recovered from the SCS procedure.  Once again not a cure but an intensive one to one programme with physiotherapy, OT and hydrotherapy working towards my goals. I will also have access to sessions on sleep management, pacing and info sessions on the drugs prescribed for CRPS.  I will update you once I have been to this.  My first goal is to try and get to using one crutch instead of two, and improve my walking.

This last 15 months has been the toughest I have ever had to face, but you have to dig deep, and it is hard when you are in constant pain etc.  to fight for anything you can find that you feel will help you. So whether that is adaptions in the work place, a bath seat, help in accessing footwear, physiotherapy, quicker appointment etc, get busy on the internet, approach anybody that can help access quicker appointments, maybe your GP can put some pressure on the Pain specialist to see you sooner - worth a try.  Be honest with your GP when you are not coping and also with work.  Luckily I have managed to keep my job - but wow has it been tough!  I have had over a 100 medical appointments over the last year, including all my physiotherapy and OT sessions.

Hang in there...you are not alone.  I really hope you get some kind of treatment in place soon.  Gentle hug.

It certainly sounds like CRPS and yes, probably since your first surgery.  I experienced similar things after my surgery.  It was also more painful post surgery than I thought it should be, I put it down to key hole surgery and the fact that I have small feet.  Like you - stitches being removed was horrific - again - I thought the nurse was rough.  But after the swelling, discolouration, burning pain etc increased- I phoned the hospital and requested an appointment as I felt something wasn't right - by then I was only getting about an hours sleep - and thought I was going crazy.  Luckily though - the doctor said it was CRPS - but besides that he was useless.  The main problem with the orthopaedic doctors is that frequently the surgery results in CRPS and then hot potato wise they past you on...and then can say they never treat anyone with CRPS - part of the deniability process. Thankfully after a further two painful visits to the orthopaedics dept, we agreed that I would be 'discharged from their service'.  On the last visit I refused to let them touch my foot/leg instead I told them I would show them what I could or not do with it.  Luckily the pain management doctors are better at believing us and what we tell them - and most will thankfully be more hands off - so that should set you mind at ease.  

I am sure you have read that statistically a CRPS patient will see +/- 5 doctors over 2-3 years before getting a diagnosis.  Fortunately - the only good part really - was that my diagnosis was quick - but after that you are pretty much left in the lurch until you can 'assemble' your medical team. AND ASSEMBLING THIS TEAM IS CRUCIAL!

 I am afraid - and it is exhausting especially when you are dealing with chronic pain - that you are going to have to really push for your appointments and treatments to start with.  I have never been a 'complainer' - but now if I feel that sometimes I have had to- in order to fight for my rights as a patient.  Also when telling orthopaedics doctor not to touch my foot as the last appointment had left me in tears and heightened pain for days - pre CRPS I would never have disagreed with a doctor like that.  Not any more.  So this last year has been a steep learning curve and an uphill battle at times to get the support I have needed.  But it has been worth it as I now feel quite confident in the medical team I have, and the support I have from my close friends and family,

I think you need to see your GP as soon as possible- DO NOT WAIT -  the one that thinks it is CRPS - sounds like an approachable one.  Book a longish appointment - and pre appointment write everything down. (and make a copy).  That way if you get emotional and chances are you will - you have your notes to refer to.  I have also left my notes with the GP afterwards so that they can scan it into the system - and that way it is a better reflection on your discussion/appointment than the doctor trying to summarise it for themselves.  My family thought I was crazy when I started doing this - but I said it helps me remember it all when I am in the appointment. And more importantly it seems to work with my GP.  I try and see the same GP each time as not all doctors have seen/know about CRPS.  I think statistically CRPS is mentioned for about 10-15minutes in most medical schools!  

You need to be completely honest with this GP - seeing as he is your only option at the moment.  Tell him/her exactly how you feel, if you are depressed, not coping with work, home life etc lay it all on the table. What symptoms you have - including the weird ones - I have insomnia, hypersensitivity to smells/sounds, problems with spellings etc.  All connected to the CRPS.  Are there any issues at home or work you need help with?? For me it was the bath, and needing the wheelchair for long distances.  It sounds like crutches and a wheelchair would be helpful for you.  I know we have to move as much as we can - but sometimes we also need a break and if using a wheelchair for a trip to town would help then use it.  Hopefully the GP will refer you to some form of occupational therapy department re wheelchair assessment - they also then helped me with the bath seat/ and a footwear appointment - alas the footwear thing is still a big issue.  Scary with winter creeping up on us.  OT should also help with stools for help in the kitchen for tasks like cooking etc.  All these little things just make life a bit easier, and help to conserve the energy we do have.  

Your GP could also look at another physiotherapy referral for you.  But it needs to be a physiotherapist who knows about CRPS or is prepared to learn and research it.  I have been really lucky with mine - although he is on the young side - he obviously had done his research - and he is also open to any research I have found on line, in books etc.  So we have a really good working relationship - and this is VITAL - I was terrified on my first appointment - that he would grab my foot and pull it around - and thankfully it didn't happen.  So I trust him - I have a 40 minute appointment each week with him.  We work on improving the movement I do have - and as mentioned previously I have made some improvement.  However, I know it is hard for family and work mates to understand but you will not be 'fixed' after 6 trips to physiotherapy like someone with  normal post surgery physiotherapy would be....it is slow progress and will probably be for life. Hence it is critical to find a therapist you can trust, who is open, and knows CRPS.  We also work on trying to desensitise my foot/leg - very slow progress on that point. And we are working loads on trying to improve my gait. Another tip - try and book your physiotherapy to be a time in the day when you can literally do nothing afterwards.  I get really tired after mine, and also sometimes - depending on how much we have done - I can also feel nauseous - so I usually go to mine around 3pm  and then go straight home.  SO research is going to be key to you finding a therapist you can develop a good working relationship with as it will be a long haul.

You need to also be honest with your friends and family.  You need to explain to them exactly what CRPS is - the symptoms you have, how it makes you feel.  And importantly that a the moment there is no cure but that hopefully you will get some relief once you are on the right treatments for you. But this will take time.  There are some good CRPS lectures on utube from CRPS conferences.  I found one from a Dr Getson that helped explain CRPS to my mother as she seriously did not get the diagnosis or how debilitating CRPS can be.  So look out for those.  There are loads of doom and gloom sites - try and look for positive ones that offer support and helpful tips.  Positivity as much as possible - look after your mind set - try mediation and positive affirmations - I know they can sound a bit weird but I used affirmations on the operating table for my implant surgeries and my medical team were amazed at how stable my blood pressure etc was - and how well I coped on the day. I swear it helped me and these new age therapies are a new option that I am looking into.  Set yourself small goals - nothing too big.  For me in the beginning just getting ready for work and getting there on time was a goal.  Again, with friends and family - try and be with the supportive people, the ones that believe you, and who will help you - it sounds harsh but you need to surround yourself with a good supportive network.  Anyone who does not believe in your illness is not worth having around.  That friend who pops round and helps load the washer, or brings you your favourite cake - they are the ones you need right now.

Work wise - your HR department should be able to refer you to a health professional to assess your work place, Mine was not the best, however my boss has been really supportive and keen for me to stay in work.  There should be  departments or services that either your work or GP can refer you to - they will look at the work you do, and your work place and recommend any adaptations and modifications necessary to enable you to stay in work.  This could involve reduced hours, flexible working, could you do some work from home?  I have slightly adapted hours, a disabled parking space, and we have made a few adjustments to my office area to help me cope. I  was also honest with my work place before I returned to work in September last year as to my weekly physiotherapy trips - so we agreed a day which worked for both of us, and I also told them straight away which tasks I would not be able to do any more due to my reduced mobility.  I also did an information session for everyone at work - which covered what CRPS is, how it affects me - including the weird symptoms! The treatment options - including what I have tried - and which did or didn't work.  These sessions were vital to address a problem with one worker who was sceptical of my illness so it ensured that everyone had the same info from me - so it addressed that problem.  It did upset a few people who hadn't realised how serious or awful CRPS is - it wasn't my intention to upset anyone - but it had an unexpected response in that it opened the communication pathway - people are often afraid to ask you about your illness - I told them I would be approachable if anyone wanted more info - and also addressed the worst things people can ask (with humour of course!)

For me the worst things I can be asked are:-

"oh, why are you still on crutches?" Seriously! would I be using them if I didn't have too!??

"You have had physiotherapy for ages- why aren't you better?"

"aren't you feeling better yet?"

It is important for people to realise that CRPS is a chronic pain condition - you won't be cured - but you could achieve some stability in your symptoms with the right treatment programme for you.

Instead - I like/recommend people to ask - How are you today? or How are your pain levels today? Is it a good day? or even a thumbs up or down visual. My info session really helped with that issue.  And also that I will ask for help when I can't manage something but I do try to be as independent as possible. So all in all work is going OK at the moment.

So to summarise - I do realise I am sending you loads of info - but hopefully some of it will help- I know that there were some great people on forums for me a year ago.

See your GP:-

Be brutally honest

Write everything down pre appointment - and keep a copy.

Ask the GP for a referral to OT, and Physiotherapy.  If the first physiotherapist doesn't work for you - ask for someone else.

Also, most important, ask the GP to contact the pain management team to see if they can bring your appointment forward.  Hopefully if you are completely honest with the GP this will be the first thing they will do.

Speak to your work place, say you want to stay in work but can you be referred for an assessment, or have modifications to your work hours, work station that will help you.

Educate those around you about CRPS and how it affects you, and be approachable.

Surround yourself with helpful, positive people.

Are there any small changes you can make at home to help you?  I have an old chair I use to kneel on when cooking when my leg gets tired.  I also use big bags to help move things up and down stairs, and use trolleys to help with moving stuff around the kitchen.

Sometimes just reorganising a space can make it work better for you and conserve that all important energy.

I also order groceries and even have found a butcher online who delivers at times that suit me. Grocery shopping is one of the most energy sapping activities there is.  Buy your toiletries in bulk - so you don't a have melt down when you run out on a bad day.  Set yourself small goals - so you feel you have achieved something.  For me if I manage to do one or two things on my weekly list I see that as a positive.  Also look after yourself, wear comfy clothes that don't irritate your leg and or arm as the case may be.  

I would also recommend getting a small notebook and writing down things that you notice when they happen - include the date.  That way you have all your info to hand when you get to the pain doctor.  I did a time line for mine from the surgery date onwards so he had a written record, and once again it meant I wasn't trying to think about dates etc when I was in the appointment - so it meant we could quickly focus on treatment options etc.  So write down anything you notice - especially the weird rash - I get mine pre spread - small red dots, not itchy or anything, then spread of the pain, and then the  discolouration spreads upwards to the new area. So I am really good about noting down anything like that. 

I really hope some of this helps, and that you get that into the GP soon and they put some pressure on the pain management team to see you asap.

Take care, and let us all know how you get on. Fingers crossed you get some treatments soon that work for you.