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Diagnosed with CRPS 10 mths ago

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Posted 2/28/2013 7:15 PM (GMT 0)

Hi,

After I joined HealingWell I was very close to cancelling, I wasn't sure if I really should be part of this group or not. And frankly, knowing most people don't understand CRPS makes it hard to open up about they way you are feeling. I know I'm not telling you anything you probably don't know but here is my story.

April 2012 I was on vacation in Florida and fell playing a game of Pickle Ball (sort of like Tennis), I broke my wrist in three places and had a piece of floater bone moving around. I'm from Ottawa, Canada and would be returning by mid April.

An othopedic surgeon in Florida reviewed the xrays and casted my arm, since I was leaving the US for home I was told to see a surgeon when I arrived as I had a complicated break, I wasn't sure what he meant. In Canada you don't just see a surgeon, you need a referral and boy I found out how hard it was to see one. It was a month after my break before I saw a surgeon and then was told I might have CRPS. I had no idea what the surgeon was talking about. I suffered for 6 weeks in several casts that became too small from the swelling, I didn't sleep at night and could not stand all the pain during the day. Oxycodon, percacet would not touch the level of pain. In Canada I was told to take tylenol extra strength and Lyrica, again neither would touch the pain level.  After 8 weeks I had my first physio appointment and was not able to handle anyone touching me. I still had no clue what CRPS is.  My physio therapist told me I should accept what I had and basically suck it up and change my way of thinking.  I broke down in front of her and was so hurt.  Remember know one had explained anything to me.  I was told to go see my GP. My GP asked me  what I knew about CRPS.  Of course I had done some research on line and found out that I had almost all the noted symptoms. I was given a depression drug to help me sleep and again told to take Tylenol. I was taking upwards of 5000mgs a day and still no relieve and I'm still not sleeping. It goes on and on. During physio one day the therapist asked about my shoulder and suggested xrays and a possible MRI. In Oct I found out that I had a tear in the rotar cuff and surgery would not be possible because of the affect of CRPS. I've been told that there is nothing that can be done about the limited flexiblilty of my wrist and try taking Aleve. Lucky for me I have been able to return to Florida to enjoy the warm weather, I don't think I would have been able to stand the cold weather in Ottawa.

It feels like I'm on my own with this syndrome. I'm now feeling similar pain in my left arm, hand and fingers and pain in my legs and feet. Can CRPS spread that fast? Somedays I have manageable pain but nights are always difficult and then come the unbearable days. Has anyone experienced losing toe nails? Or dizzy spells? I wonder if I'm being over conscious about my symptoms, after 11 months, it certainly isn't disappearing. Unemployment refused help and CCP Disability has refused. Has anyone had any success with CCP and any suggestions on who to contact for help with applying. I may need to have an expert to assist for medical confirmation. 

I would love to meet someone with CRPS in Ottawa or the surrounding area, are there any support groups in Ottawa that anyone might know of?

Thank you to those who read this, I am very sympathetic to those who have CRPS and others who have chronic pain, it is ugly.

Harleygirl50

Posted 2/28/2013 10:25 PM (GMT 0)
hi harleygirl, i am so sorry that you feel so alone. i dont have CRPS but i do have very severe pain. i know it can be depressing. just remember you are not alone. there are many people on healing well that have CRPS. Everyone here are very helpful and compassionate.

chronic pain of any kind can get you down. when i start feeling sad i get on the hw site and read about everyones day. some are good and some are bad. its really nice to know that there are other people that u derstand what we go through everyday.

anyway i just wanted to welcome you to the site and i hope you get to feeling better. im sure some other members with the same issues that you have will be on later. hopefully someone can help you out with words of wisdom. feel better soon janet
Posted 2/28/2013 10:32 PM (GMT 0)
Harleygirl,

Welcome to HW and the chronic pain forum.

There are a few on here that have CRPS.... and I'm sure they will be along to answer your specific questions....

That being said - we all can empathize and understand the journey w/ chronic pain.

Some of your post was confusing. So are you completely off of narcotic medications? Opiods are a piece of the puzzle w/ most of us w/ CP or CRPS. Have you tried any of the nerve meds? Muscle relaxers? It's great that your GP understands about CRPS.... but what has he suggested in terms of treatment?

Again, welcome. I'm sorry for the reasons that bring you here.... but hope you'll find the support and encouragement here that is a part of learning to live w/ chronic pain.

Take care --Tina
Posted 3/3/2013 1:29 AM (GMT 0)
 Thank you to those who have welcomed me to the site. I look forward to chatting from time to time.

In my case I have not been given any plan for treatment of the CRPS, this is why I was curious to see if there was a support group in the Ottawa area. I haven't been able to get into a Pain Management Clinic as of yet....up to a 2 year wait in our area. Nerve blocks were not suggested, probably because the GP and Surgeon are leaving it up to the Pain Management Clinic. So for now its Tylenol.

I have tried accupuncture and it was extremely painful and the therapist was not able to leave the needles in. I am very hesitatant to try it again.

My husband has been very supportive through all of this and I thank God for him everyday.

I will check out some of the other sites that were provided, thank you.

Again it is good to meet you!

Harleygirl

Posted 3/3/2013 4:11 PM (GMT 0)
Hi Harleygirl and Chelle, and welcome to the Chronic Pain forum. I'm Laura - I've had CRPS now for nearly 14 years, though it took close to six years for me to be diagnosed.

CRPS is a hard one for sure. One of the big problems is that there is no cure and no 'standard' treatments. Some people will go into remission - probably a lot more than it seems by reading info on the net - but generally the best you can do is try to manage the pain and try to maintain function in the affected limb/s... and then you encounter the further issue that no two people will have the same response to the same treatment. E.g. Person A may go into full remission from just a single nerve block, while Person B may actually find that their pain and clinical signs are made worse.

The protocols change a bit from doctor to doctor... each will have his/her preferred order of trying things, their preferred meds and so on, and treatments will also depend on how long a person has had CRPS for at the time of diagnosis. You read a lot online about 'staging' of CRPS... that's been largely done away with by many doctors and researchers because it's quite possible, quite common even, to display signs from all stages. A definition that is used sometimes - is Sympathetically Maintained Pain (SMP), where the pain is thought to be generated, at least in part, by the sympathetic nervous nervous system and the affect of catecholamine release on cells- versus Sympathetically Independent Pain (SIP). SIP becomes much harder to treat because the body has become far more 'efficient', I guess, at feeling pain. This is also where you get the hyperalgesia and allodynia (hypersensitivity even to light touch, breezes, etc., that can occur with CRPS).

Where the SMP vs SIP is important, is that a person with SMP will usually have a good response to sympathetic nerve blocks, a person whose CRPS is dominated by SIP will not... SMP tends to predominate earlier on, which is one reason why it's so important to get early diagnosis and treatment.

Other front line treatments usually include the 'nerve pain meds' - antidepressants like amitriptyline or duloxetine, or epilepsy drugs like gabapentin or pregabalin. It's also crucial to do some form of physiotherapy and work on desensitising the limb if needed - things like cloths of different textures, rice, birdseed, water. Some people also do well with TENS, heat therapy, ultrasound and so on. There's a bit of an urban myth out there about the dangers of ice - it's very true that ice can be very painful for a lot of CRPSers - but if you have hot CRPS rather than cold, judicious use of ice can be very soothing.

Next step med-wise would be things like tramadol and then the stronger opiates. If you have dystonia or spasms, muscle relaxers or botox injections might help as well. After that there is ketamine, finally surgical options like the spinal cord stimulator and pain pump.

Hope that helps a bit - and if you have anything you want to ask please do and I'll do my best to answer.

Laura
Posted 3/3/2013 5:25 PM (GMT 0)

Hi Laura,

I'm so sorry to hear that you have had CRPS for 14 years. I can't imagine what you have gone through over that period of time.

Thank you this is very helpful information in your post. I was presribed amitriptyline however it was to help me sleep, Even at 40 mlg it wasn't working so I stopped. I wasn't aware that it could be beneficial for the nerve issues. Since I am very super sensitive to cold as well as breezes (warm or cold) this drug may have helped somewhat. I'll have to talk to my GP about this and resuming.

Laura are you aware of these symptoms being part of the CRPS - blurry vision, problems hearing and pain in the ear, headaches, (they are consistantly felt on the same side as I developed the CRPS first which is my right arm.

As you mentioned, no two CRPS patients are alike, I did try the contrast baths, ice to hot water. For me it was the most painful experience, there was not benefit, only severe, severe pain for days after. I responded much better to hot baths for my arm. Even electric heat pads for my shoulder was welcomed.

CRPS is so complicated. I will have to consult my GP again to see what options she can offer to help me for the long term.

Again, thank you for your post.

Harleygirl

Posted 3/4/2013 5:36 PM (GMT 0)

Hi Harleygirl

I wanted to pop in and welcome you to our chronic pain forum. I'm glad you found us but sorry you are suffering so much with CRPS.

I see you have already met some of our members with crps and gotten some good suggestions. I don't have crps myself but i wanted to let you know that I do live in Ottawa, so maybe we can hook up some time. My contact info is in my profile if you would like to email me.

Take care

Suzane

Posted 3/5/2013 8:01 PM (GMT 0)
Harleygirl50

My son has had RSD/CRPS for nearly 7 years. We have tried many treatments. Lots made him worse, e.g. nerve blocks, acupuncture, physical therapy (done with therapists who did not understand RSD), spinal column stimulator which was removed (the scar where they put the battery is sometimes what hurts him most). However, some treatments have helped. Ketamine infusions lessened the pain for a while. The most effective therapy has been Integrative Manual Therapy which has enabled him to walk again. The main center for IMT is in Bloomfield CT just north of Hartford, CT. We heard about it from a woman who lived in Israel who flew to CT for a couple of weeks of treatment at a time. She is now completely cured (or in remission). Friends met her in a dance class - this after she had been unable to walk. The treatment has done wonders for our son and hopefully one day he will be able to live a normal life because of it.

A lot of doctors have no idea about CRPS. We have been told that it does not spread!! That there are stages and also that this theory has been discredited (this by a doctor very high up in the pain management world). We were originally told that if you did not have certain treatments within 6 - 12 months of getting RSD, then it was incurable. We have since met the woman who was cured by IMT who had RSD for 2 years before it was diagnosed and 4 years before starting IMT.

Most RSD/CRPS patients are on stronger medication than Tylenol. My son had most success with Methadone which is popular with insurance companies apparently bc it is cheap. Before Methadone he was on fentanyl which was partly helpful. But medication only reduces the pain a little. The only time my son was not in pain was when he was having a ketamine infusion. However, when the infusion stops, being back in pain can be very depressing.

Good luck. We found alternative medicine to be more effective than traditional treatments although ketamine infusions were very helpful.

There is hope. You can get better even though lots of doctors do not know how to help.

lgs
Posted 3/6/2013 8:42 AM (GMT 0)
Lgs, how wonderful for your son! How old is he? My heart goes out to you as a parent seeing a loved one going through this disease.

There are certainly a lot of doctors out there who are behind the times. I'm lucky to have a good team behind me, but I've had friends waving swollen, discoloured limbs at their doctor and still having the dr tell them it doesn't spread :(

The idea about needing treatment within 6-12 months isn't so far wrong in many ways. From all the studies I've read, the various doctors and other experts I've chatted withi over the years, it has been pretty conclusively established that early diagnosis and treatment greatly improves the chance of recovery. It's not easy to explain - I made a bit of an attempt at it earlier - but with time CRPS becomes ingrained with changes in the central nervous system... This will occur at different time periods in different people - for me, I'd guess it was actually close to six years in, when I had a second operation for a knee problem (the CRPS was triggered by the first op, back in 1999).
Posted 11/3/2016 6:31 PM (GMT 0)
Hello Harleygirl50
I am so relieved to find someone in Ottawa who also has CRPS. I live in the Byward Market.
I was diagnosed 2 weeks ago after breaking my wrist on September 5 but am convinced from the pain levels that CRPS was present within a week of the break.
I have found it very frustrating and frightening in finding some help with this. I had been doing extensive research on CRPS about 3 weeks after receiving my cast and found a lot of answers. I understand that some treatments are essential to be applied within 3 months and are not effective after CRPS is in the central nervous system. I was given some Hydromorphone and Naproxen from the hospital and told to wait until the 24th of November to determine if I could be referred to the Pain Clinic which has a 3 month waiting list.
I saw my GP a few days ago and expressed my concerns and he basically said it wasn't his area. I did ask for some Ketamine cream.
I would love to talk to you about the treatments you are receiving and perhaps we can be a support to one another.

Kotchka
Not sure if this site allows us to communicate other than here but I would be willing to supply my contact information if it is allowed.



Harleygirl50 said...
Hi,

After I joined HealingWell I was very close to cancelling, I wasn't sure if I really should be part of this group or not. And frankly, knowing most people don't understand CRPS makes it hard to open up about they way you are feeling. I know I'm not telling you anything you probably don't know but here is my story.

April 2012 I was on vacation in Florida and fell playing a game of Pickle Ball (sort of like Tennis), I broke my wrist in three places and had a piece of floater bone moving around. I'm from Ottawa, Canada and would be returning by mid April.

An othopedic surgeon in Florida reviewed the xrays and casted my arm, since I was leaving the US for home I was told to see a surgeon when I arrived as I had a complicated break, I wasn't sure what he meant. In Canada you don't just see a surgeon, you need a referral and boy I found out how hard it was to see one. It was a month after my break before I saw a surgeon and then was told I might have CRPS. I had no idea what the surgeon was talking about. I suffered for 6 weeks in several casts that became too small from the swelling, I didn't sleep at night and could not stand all the pain during the day. Oxycodon, percacet would not touch the level of pain. In Canada I was told to take tylenol extra strength and Lyrica, again neither would touch the pain level. After 8 weeks I had my first physio appointment and was not able to handle anyone touching me. I still had no clue what CRPS is. My physio therapist told me I should accept what I had and basically suck it up and change my way of thinking. I broke down in front of her and was so hurt. Remember know one had explained anything to me. I was told to go see my GP. My GP asked me what I knew about CRPS. Of course I had done some research on line and found out that I had almost all the noted symptoms. I was given a depression drug to help me sleep and again told to take Tylenol. I was taking upwards of 5000mgs a day and still no relieve and I'm still not sleeping. It goes on and on. During physio one day the therapist asked about my shoulder and suggested xrays and a possible MRI. In Oct I found out that I had a tear in the rotar cuff and surgery would not be possible because of the affect of CRPS. I've been told that there is nothing that can be done about the limited flexiblilty of my wrist and try taking Aleve. Lucky for me I have been able to return to Florida to enjoy the warm weather, I don't think I would have been able to stand the cold weather in Ottawa.

It feels like I'm on my own with this syndrome. I'm now feeling similar pain in my left arm, hand and fingers and pain in my legs and feet. Can CRPS spread that fast? Somedays I have manageable pain but nights are always difficult and then come the unbearable days. Has anyone experienced losing toe nails? Or dizzy spells? I wonder if I'm being over conscious about my symptoms, after 11 months, it certainly isn't disappearing. Unemployment refused help and CCP Disability has refused. Has anyone had any success with CCP and any suggestions on who to contact for help with applying. I may need to have an expert to assist for medical confirmation.

I would love to meet someone with CRPS in Ottawa or the surrounding area, are there any support groups in Ottawa that anyone might know of?

Thank you to those who read this, I am very sympathetic to those who have CRPS and others who have chronic pain, it is ugly.

Harleygirl50

wink wink :-) :-)
Posted 11/4/2016 12:57 AM (GMT 0)
Hello Catherine & welcome to Healing Well. So very sorry to read about your recent dx of CRPS. Finding a dr that understands & knows how to treat this condition is vital. Someone like a GP cannot handle this for you. Getting into a pain mgt dr is the direction you need. Keep pressing for a referral. There is treatment available to treat your condition its a matter of getting in with the right dr.

The members you are hoping to connect with above have not been active here at Healing Well in over 3 years. I looked at their profiles & none of them have an email listed. We are not allowed to put our personal information out here in the forum. That would open the door for potential spam.

While researching CPRS please be careful & get info from reliable sources. There is a whole lots of garbage on the internet.

Keep us posted on how you are doing. By the way, since this is a very old thread we do invite you to make a separate intro post. If you can copy & paste what you have written above. I will lock this thread as we like to keep the old threads off of the main page.

Take care.
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