NeuroTalk Support Groups - I don't know what to do!!

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - I don't know what to do!! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/181162-dont.html)

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!

Quote:

Originally Posted by Neurochic (Post 940383)

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, 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