I don't know what to do!!
 

On Saturday the Lyrica seemed to help almost like a miracle in the morning....then pain came back. still taking lyrica amitriptyline and tramadol..no more oxycondone. i only took 1 extra 2 days the Dr had only given to 10 of them and I was supposed to take 1 every 12 hours...

I have a nerve block scheduled for wed but I am in tears from the pain right now.......I don't want to go to er but my docs cant see me they full up .....


I don't know what i should do.....but i cant take it seriously I don;t want to go to er but I dont know what to do ...

Emily, I think if I were you, I would head for E.R.

Don't feel badly because of it. You need some treatment and should get it. Many with CRPS have ended up in E.R.

Good luck............keep us posted.

Put on soothing music, fill a hot tub, turn off the lights in the hot tub, and breathe deeply. If that doesn't reduce your pain to a manageable level, go to the ER or an Urgent Care. If you can't manage the wait to be seen, call an ambulance. Make sure you know exactly what they give you to inform the anesthesiologist in the morning.

The combination of meds maybe worked well but since your Oxy is gone... or you may simply need a higher dosage.

HEY I was able to get a lodicaine patch...helped but not quite killing it...man this suck so bad. My hand feels like a block of ice......and i cant straighten my index finger? anyways if it gets worse with the patch (got it from my doc) I will go to er........thanks you for caring :hug: still hurting though trying to breathe deep....

Hopefully that will get you through until your nerve block Emily!!

Hang in there......sometimes pain can fade too!! You just never know with this condition.

Deep breathing and a bath that LIT LOVE suggested really are excellent suggestions. A good part of pain management is mental and many of us have learned techniques along the way that help us "manage" the pain.

I wouldn't wish this on any one but I wish my fiance could understand the pain.....he thinks I should just deal with it......:(

For Emily
 

Emily
I have been a regular reader of posts on Neurotalk but never a poster. I struggle with these kinds of boards because although I think they can provide great support to people who feel alone and desperate at times when they most need help, I always worry about the inevitable misinformation and incorrect medical opinions and advice that people share which can end up doing harm. I just want to be honest, not to decry this kind of board.

I felt I had to post when I've been reading your desperate and very sad posts. You sound as though you are drowning in the pain and fear and I know exactly what that feels like. I have had CRPS type 1 for over 5 years. I have this from surgery to my right ankle. I rapidly experienced the same pain in my left ankle. In time this pain developed in my fingers, hands, arms, shoulders and back although it isnt always present in my upper body - it comes and goes there. Amongst a myriad of symptoms, I live with constant pain in both lower limbs from my knees to my toes and I seem to be noticing the pain moving up into my knees. I am in the 5% minority with 'cold' CRPS which has the highest rates of associated movement disorder and the lowest rates of remission. Both features have sadly been true for me in a very significant and utterly life changing way.

For more information about your condition, I cannot recommend strongly enough that you start to read as much as you can and the website of RSDSA is the most reputable US source. The Dutch Professional Treatment Guidelines for CRPS are excellent and easy to read. The Netherlands government has invested in an 8 year programme of international research into CRPS which recently ended. Their understanding is without doubt the most coherent and up to date in the World. If you look online and search for the TREND consortium you can read all about the research and the people and organisations involved. I have personal experience of the Professor who ran the whole TREND programme - supremely knowledgable and very human.

At your stage in the process, its normal to desperately hope that the next drug or procedure will cure you. It won't if you have been correctly diagnosed. It will be part of a mix of things that may eventually make the pain reduce so that it is no longer limiting your life activities. The desperation and panic is loud and clear in your posts and this is normal too. You have an early diagnosis and are aware of the idea that if it is treated early and aggressively this gives the best hope. However, the stress and panic will actively make your pain and CRPS worse. You need to take a deep breath, try and take a step back and minimise the stress in your body and in your lifestyle. It's highly unlikely that even if you do achieve a remission, it will be an overnight magic bullet. If it is, it's highly unlikely you ever had CRPS.

You will have to work with a cocktail of medication, physical exercises, including really painful ones, equipment and therapies to achieve a remission or significant reduction over a period of a year, two or more to get there if you are lucky enough to manage it. During that time you will probably have to actively experiment with several medications at different doses in different combinations and the same goes for the non medical therapies.

My personal view is that patients need to try and put aside any theoretical or moral objections to taking various types of drugs to maximise the chances of pain reduction. You also have to accept that it is quite possible that you will have to take these drugs for many years. I expect to be on mine for the rest of my life. However, the quality of life that drugs can give CRPS sufferers can be amazing. Even without remission, each of my medications has an effect on my pain and other symptoms which, on balance, makes them worth taking, in spite of all of the unpleasant and difficult side effects. I couldn't live without the small amount of relief I get from them. You may never have remission but the medication can make your pain manageable. Yes, the drugs are only masking the pain. If you stop taking them, the CRPS pain is still there. That is what they do, nothing more. Some people do find that over time, if their pain is well managed and controlled, they can reduce the number or dose of drugs and the underlying pain has actually reduced though. This also happens with CRPS as the nature of the pain tends to change over time. Pain control is about allowing you to try and regain function in your limbs and life - this works in different long and short term ways. You will need to be your own advocate for treatment and support. You will need to fight the system and the doctors who are supposed to help you but aren't helping. This is reality.

Try not to assume every single thing you feel or see is CRPS related. It's easy to do because you naturally become hyper vigilant looking for things going wrong. However, often this only makes you even more stressed. If you can maintain perspective and stay as relaxed as possible you have a better chance of minimising your existing and future symptoms.

You need to prepare yourself for the possibility that you might need to live with pain in the long term. The sooner you engage with both pain reduction and pain management techniques, the better your quality of life will be, both in the short and long term. You may well also have to cope with depression and anxiety into the bargain. I certainly have had to learn to live with depression as a consequence of both my chronic pain and the other severe, disabling features of my CRPS. I have throughout worked on coping with and trying to overcome my depression and I still do. At the moment you are trying to get to the doctor or ER immediately when you feel the pain is awful and you are in distress - you may have to come to terms with the fact that there isn't going to be a lot the doctors can do eventually. You will develop your own ways of coping with the pain though. Minimising stress is perhaps one of the most critical things you can do.

I fear that your partner is not engaged with supporting you. This is important in two ways. Firstly because you are suffering and need help and support from others and secondly because you are unlikely to be able to provide much support to anyone else during the time that you are struggling so much yourself. Only you can decide how to deal with this but don't do anything too hasty especially if you could be in a depressed state. You must keep communicating though and I'm sure that eventually you will resolve your relationship issues one way or another. Many partners find that they simply cannot cope with the significant illness or disability of their loved one. Others rally round and do an amazing job with the end result being a closer relationship. Sometimes it merely speeds up the end of a relationship that wasn't going to last anyway. If your partner is unable to help you, use your friends and family as much as you can - you will need them and they will want to help you. I know many people who have suffered serious medical conditions and disabilities and generally they have gone on to find fantastic partners who simply accept them complete with their medical and physical impairments. It's not the end of the dating game!

I'm not meaning to sound harsh, I just want to give you the honest thoughts of someone who has been where you were but who is now in an emotionally better place. This is the reality of a diagnostics of a condition like CRPS for so many people. If you can accept that, I promise you it will help you cope more and panic less. Accepting it doesn't mean that you are giving up on your aim of finding remission. Managing CRPS and coming to terms with accepting the condition is a marathon not a sprint and at times it will feel like the worst full time job you ever have. It is incredibly hard to deal with all of this through the misery of unrelenting pain but it can be done and you will get there. Many people have gone through this and they manage to have good lives in spite of CRPS but you need a lot of patience.

If I haven't helped you then I apologise but I would have been dishonest to you and myself if I'd said anything else. Keep posting and people will support you.

very true..
 

this is the 3rd time writing this as my computer sucks....and like messing with me.


I am desperate, I DO feel ALONE sometimes. I know there are others out there who are in MUCH worse pain than I and I'm scared that is my future. I can't clean my house very well, my work is suffering, I can't even pick up my sweet cuddly 7yr old daughter....and it's only supposed to get worse?????Sigh, I am trying to keep calm though. It may not seem like it but posting here helps "get it out" since I can't with my fiancé. And we'll see how it goes there.I tried a new step...I bought him flowers for no reason. Just to remind him if the love we once had and that we don't need to lose it....It seemed to help a little. ...He still thinks "he knows" what this pain is. Because he had "carpal tunnel"....

Trying to get the medications that would be strong enough to kill this pain in my state, and city, are insanely difficult. I unfortunately live in a "tweaker central" type of town. You know where everybody's id "disabled" or have "chronic back pain" then they turn around and sell their pills or abuse them and take them for pleasure.My PC doesn't know much about CRPS or he would've prescribed more than Oxycodone 5mgs 1 tab every 12 hours....I took more than that when I broke my ankle...The Anesthesiologist who is doing my block "doesn't prescribe narcotics":rolleyes: And My original "Pain Management" Dr. doesn't want to interfere with what my PCP is perscribing.....grr! Nasty stupid cycle!


I am trying to face the fact that I will probably have this the rest of my life.
I am trying to find way to cope with the pain. Most days I can. But there are some days that just.....go overboard. Where nothing seems to help and I get tense from the pain and try not to cry but the tension and crying makes the pain worse.....yet another cycle. I have also NOT missed a full day of work. I can't. I don't get child support, and I work FT. I barely keep the roof over our head. If I had a bunch of time off we couldn't eat, or have heat, or anything but the barest of essentials.


I am having a hard time typing this. as typing seems to be a "stressor"....ha my jobe is 70% typing.........fun.

I have spoken to a lawyers office. I'm just "keeping them in th wings" so to speak. If this IS going to be my LIFE from now on. They need to pay me. A LOT. Because this doesn't just afffect me. Everytime my daughters face falls because I can't pick her up.They should pay. Everytime her face looks so sad because I can't play because Mommy's in pain. they should pay. Everytime I swallow the agony and pretend everything just fine so I can do something with her, and then later burst into tears in private because playing with her made it SO much worse. They should pay. We'll see what happens.The stars seems to get their doctors to give them whatever the hell they want...should I moved to Hollywood?? lol anyway thank you for you time....I have to quit now......the pain is flairing again...i ****** it off by typing......Take care and Thank you all!

Emily

Please don't feel that it's "supposed to get worse". There's nothing to say that your CRPS will get worse than it is now. Contrary to lots of popular opinion CRPS is not a progressive condition. It can progress in some cases as you will have seen from some experiences here, but its not classed as a progressive medical condition. It is just as likely to improve with a suitable treatment and management regime and as you find you get better at coping especially as the distress and panic you are feeling just now reduces.

Also, don't feel you need to reply to my posts - I know that it is painful to type. I just want to put my thoughts out there for you to consider and use if they help.

From your posts, you seem to be in a lot of distress and this isn't a criticism of you. It's normal to feel this way. That doesn't mean you should suffer though. I would urge you to ask for referral to a psychologist, therapist or counsellor who has experience of assisting people either with pain conditions or with life changing diagnoses. Your partner (and that goes for most people's partners) doesn't have the objectivity, patience or the skills to listen and to help you in a situation like this. Inevitably, he has an emotional attachment to you and to his own issues. I spent a lot of time and effort trying to get my partner to read stuff and understand my diagnosis but the truth is, he just can't be inside my body feeling what I feel. At various stages over the past 5 years, I have had professional emotional and psychological support and it has been invaluable for me. Posting on a board is good but having a real person who will listen and is there just to help you without judging is desperately important.

What you are describing of trying to get your head round the potential for having this for life is also completely normal. It's an awful emotional roller coaster and its been the single worst experience of my life coming to terms with my pain, disability and unknown prognosis. It's irrelevant whether other people are worse off than you. Don't feel any guilt about that - its not a competition and your life is being seriously affected so you are entitled to feel as you do. I would say to you that it will take time to get through this. Don't try to get yourself 'sorted' in a day or a week or whatever. You can't put a timescale on this. Just take each day or hour or 5minute period at a time - whatever you need to get through this. Eventually you will be able to look back and see improvements in your situation and your coping - I promise you this will happen.

Your work situation sounds terribly tough. I don't have any answers for you. I thought I could carry on with my high pressure job and I struggled for as long as I could. I had 2 significant breakdowns before I had to give it up. My work was destroying my health and causing my symptoms to run out of control. You may well not have any choices, I understand that but you might want to at least think about whether there are any ways your job could be rearranged to make it easier for you to cope and to help your symptom control.

For me, that didn't work and I have lost a lifetime's career that I loved not to mention all of the benefits that went with that. Can you get input from a physiotherapist or occupational therapist to see if there are any workplace interventions or equipment that could help you? Instead of typing could you use voice recognition software and then only physically type to make corrections etc? I hesitate to ask this but could your partner do more or try to bring more cash into the family home at this time to take the pressure off you a bit?

I suggested that you look at the Dutch Professional Guidance (for example) because it will give you the knowledge to deal more effectively with your various doctors. It will allow you to ask for the various medications that are most likely to assist you based on world leading professional guidance that is underpinned by evidence. That is very hard for physicians to deny or refuse. It gives you power. When you are desperate and emotional and in pain it is too easy to come over as if you are drug seeking or unbalanced. I have been in situations where i have been ranting and must have come across as a total crazy when i have seen my doctor! It was only because i was distressed and in agony and at the time I thought I was entirely rational! This makes any doctor more reluctant to prescribe because they are thinking about their own liability.

I was utterly frustrated by my GP knowing nothing about my condition but I was fortunate to have a Pain Consultant who was clued up. Unfortunately I lost him fairly quickly in my CRPS journey due to his terminal illness. My GP respected that I had done my research from good quality sources so when I asked for referrals for therapies, emotional support or medication he was very supportive. My subsequent pain consultant was nowhere near as good as the first and was disinterested. He felt there was nothing else the Pain Management Service could offer me so I now work with my GP. We have developed a level of trust and that has proved invaluable. However, it works because I educated myself at the outset, I keep informed and he trusts that I am working from reliable medical sources. It has proved virtually impossible where I live to get any consultants of any specialism who are experienced in dealing with my 'cold' CRPS presentation with severe movement disorder which is why I had to go abroad to find experts.

Most CRPS patients find that they have to manage the doctors rather than the doctors getting together and collectively managing the patient. If you don't feel up to doing that yourself, could you ask a friend to help you. Get them to go to the medical appointments with you and have them help you do the research into the different medication and other therapies that may help. I know you live in a difficult area where everyone is perceived to be seeking medication to sell but there's no reason why you shouldn't be able to show your doctors that you are different with your willingness to help yourself and your knowledge of the condition and the treatment options. Be honest with your PCP, anaesthetist and Pain Consultant about the problem that they all seem to be relying on the others for guidance so you feel that you are falling between them all and see if they will agree that one of them will be the lead clinician (obviously try and make that the one you think will be best for you).

I wish there was something more useful I could do to help because i can feel your pain. I recognise the place you are in and I know how desperate it feels. It will get better, you will find a way through this. I'm over 5 years down the line and its not as bad. It's not because I'm 'better', its just that my condition is better managed and psychologically I'm coping better.

Neurochic,

I thought your whole post was excellent......you should try it more often !

The above parts were my favorite/what I think is MOST important for Emily (and others knewly dx'd) to read again and again.

Thanks for chiming in !

Thank you Finz - that was very kind of you.

When I read Emily's posts I could identify with the place she is in and her very raw and intense feelings of panic, pain and loss. Being over 5 years out on the journey, I know how that changes. However, when you are in that desperate place, it feels as though there will never be a way out. Its an almost suffocating, drowning sense of overwhelming panic as your life is out of control and you are in constant, un-ending pain. When you add in some of the misinformation that is out there on the web, it cruelly and unnecessarily compounds the horror.

I will think about posting a bit more in light of your feedback.

FMichael has written about WA being essentially the worst state in regards to how they deal with chronic pain patients. You might want to look through his postings.

Drug addicts are more likely to want Immediate Release meds, and Time Released meds would be a better help for you anyway. Not sure it'll make a difference in WA, but it's at least a place to start.

Asking for a pain psychologist consult is a very good idea. It was only with this help, that I learned to stop guarding my RSD limb, as well as learning some coping mechanisms.

I DO believe with the right intervention early on, remission is a real possibility. The block might give you great relief!

Receiving the best care locally might not be sufficient. RSD is rare. You may need to look to a larger city or even travel to another state.

Good luck today. ;)

Hi Neurochic,

I agree-- your post was awesome advice!!!!--You are very sincere about the reality of the disease ---and her relationship. Thanks for posting !!

Hi Emily---I get it --I ended a very long term realtionship-- which was hard !! It it was very good one (or so I thought it was) --for a longtime --but I was healthy and stronger and could do a million things. I found out the reality of it--based on reactions of my medical procedures-- if things even went slightly south for me medically so did the realtionship. I finally faced the reality and ended it. You should not enter a marriage with all these issues. We all as human beings deserve love with out condtions!!:hug:

I'm wondering if you are on any antidepressants? Or medication for anxiety?

My RSD started post surgery. I was already on cymbalta for nerve pain and my PMD increased me to the max dose around the time if my RSD diagnosis. I have found it to be helpful for both the pain and depression from dealing with the pain. This is not to say I never get depressed or feel helpless. Some medications can be used to help anxiety and other symptoms as well...so you don't need to just have an anxiety Med added and then something else for say...shocking type pain. Not sure if that makes sense.

I feel for you with your fiance being supportive.

I have been lucky to have my parents, sister and a really great friend who are supportive in helping with shopping, house and yard work and are also emotionally supportive.

I hope things get better for you.

Mg neck prob
Thank you, your comments are appreciated. I think it's easier to be reflective on all of these issues when you are further down the line like I am. I couldn't have had this perspective early in my CRPS journey. I am reconciled to having the condition for the long term and simply invest my efforts in the day to day management of my symptoms and lifestyle. It's not that I didn't try to achieve a remission or that I just gave up, I tried absolutely everything available and proactively sought out referrals and treatments. Ultimately, though there came a time when it was evident that I was not going to achieve any sort of remission in spite of all my hard work so you then have to move on with the next phase of the acceptance process.

Like fbodgrl, I was prescribed duloxetine (cymbalta) fairly early on. It has been a real help with my pain. It may have helped with my depression but its simply impossible for me to tell. I have found it to be an excellent part of my medication package. It has the advantage that it is prescribed at the same dose level for both pain and depression unlike many of the other anti-depressants. In that way it can help with two aspects of CRPS at once. Struggling with depression on top of CRPS is exceptionally hard - I am a firm believer that it is important to identify and then treat/manage the depression right from the earliest stage because it has a direct effect on pain levels and coping ability.

Hi Neurochic,

Pain and depression totally make everything go crazy. They go hand in hand .... the reality of acceptance of the disease is a very important concept in treating and coping both mentally and physcially. I agree with eveything you said 100%. I just hope for you ---symptoms improve and wish you more good days then bad. Please post more often ..as your post are very insightful and many people with benefit from your advice!! Hope you have a Good Holiday!! :)

Its only natural that chronic pain, disability and a massive life upheaval should lead to high rates of depression. Having never had anything like depression in my life, i was already suffering with depression before my CRPS was diagnosed because my pain was so intense and, in spite of my mammoth efforts, I wasn't able to make the post surgery progress I should have. Of course, it only makes everything including the pain worse.

I've never cried so much in my life as I did since my surgery over 5 years ago. I was suicidal for a very long time too. I still struggle with depression but its not as bad as it has been. It's so critically important to diagnose and actively treat it alongside the other CRPS symptoms.

Mg neck prob
Again, you are kind. I'm under no illusions about my symptoms improving but your sentiments are appreciated. I'm looking forward to the holiday period - more time with my hard-working partner will be great.

Maybe I can give some hope, although my case of CRPS is not as severe as the ones you have described. I developed CRPS in my fright foot after having broken my ankle and subsequent surgery. I was in severe pain for several weeks but was lucky to be diagnosed early on. With the help of a pain physician I was put on Lyrica, Amitriptilin and Tramal on a high dose, which helped reduce the pain significantly. Now, 1 1/2 years later I have been able to stop taking any pain medication. My ankle still hurts, but the pain varies from day to day, so I need to adapt my usually active lifestyle. Strangely enough horse riding is fine, I guess because I do not put any weight on my ankle- and because I love it I tend to forget about my foot while I am on the horse :-). Long walks or sight seeing trips however are out of the question. After having gone through all the depression and frustration I know that any tension, frustration or anxiety only makes my pain increase, so I have taken up meditation and relaxation therapy. For me homeopathic snake poison injected in the ankle combined with acupuncture helps but has to be done every 3-4 weeks (sometimes it works brilliantly, sometimes I hardly feel any effect). It definitely was not a linear improvement so far, lots of ups and downs! I don't know how things will develop but at the moment it's okay as it is. I wish the pain would go away completely but I have learnt to adapt....And I have learnt that as a patient you have to fight for treatment that works for you as an individual, no matter what other people/physicians might say.Pain is a very individual thing and cannot be objectively measured by outsiders....
@neurochic: I love your postings!
All the best!

Neurochic, THANK YOU, for your post to EMILY-we all benefit from you compassionate post. also thank you for your referrals- I will research them.
You have a lot to offer and I personally am grateful for your perspective. It shows you have done a lot of work thru counseling and applying the information from those in a position to help those of us who have experienced life altering events like the loss of our health, jobs, relationships etc. loretta

That is kind of you Loretta. I am glad that you think what I wrote in that post is also of some use to you. One of the bothersome things is the sheer amount of information about CRPS on the internet that is inaccurate or has no evidence to support it. It can be really difficult to tell the conjecture and baseless assumptions from the factual information that has an evidence base behind it or even just a credible hypothesis underlying it. When incorrect information is continually repeated it sometimes takes on a life and (false) air of authority of its own.

When people in desperate positions are faced with medical professionals who don't know much, and a condition that is genuinely so poorly understood by medical science, its so easy to start looking and not necessarily to realise that there is a lot of stuff out there that isn't correct. Sometimes, I think that when desperation and pain is present, it clouds judgement and its really easy to 'want' to believe things even if you kinda know deep down that they don't stack up - I am sure we've all been there at some point! That's why i think it's so important to try and read things like the various sets of treatment guidlines, case reports and published clinical trial reports. It gives you a good grounding and its a bit easier to spot or challenge the stuff that doesn't add up, is out of date or just plain wrong. It's shocking too that the knowledge of so many doctors is out of date or inaccurate and the only way to know that or to be able to challenge their opinions or advice is to have credible information.

Somehow, for me, i feel that the more I know and understand about the up to date medical science and treatments, the more control I feel I have. A condition like CRPS robs you of the control you previously had over your body, life, relationships, career etc. Anything you can do to re-inject a sense of control back into your life and minimise the feeling that you are in a kind of helpless free-fall is a huge benefit. It's also a condition where I think the more you can feel you are 'doing' do to help yourself, the better the chance you give yourself of coping better with your physical and emotional symptoms. It's incredibly hard to do all that, I am not under any illusions and it takes time, but even the tiny positives are worth their weight in gold when you have this diagnosis.

Hi Neurochic, thanks for your response. I also like to go to reputable sites for medical information. I've just recently researched again the sympathetic nervous system, parasympathetic nervous system, vegas nerve as I've been passing out several times. Since CRPS is a disregulation of the sympathetic nervous system and no regulation of blood pressure high or low, heart rate, fast or slow, even our digestive system is affected. I've yet to go to the sites you mentioned, but will tonight or tomorrow. I've had this 16 years now-full body. I had a surgery that resulted in frozen shoulder (RSD) Wasn't diagnosed for 5 years. I'm mobile, have one crippled hand. Have gone thru about 150 physical therapy sessions or rather torture therapy.:) But was worth it, got the use of my shoulder arm back.
Thank you again for your thoughts and insight. loretta