CRPS and My Virtual World

6 years 8 months ago #20810 by grappers
Replied by grappers on topic CRPS and My Virtual World
Hi Kim,
Living in pain is never going to be easy, and the changes you are going through are only going to happen day by day, pacing sounds easy when it is put to you, but as many will contest it takes a long time to master, with lots of fails along the way, and it does become easier as you say, but it is not a process that can be rushed, if it was none of would have the need for this forum or all the medical intervention required.
Acceptance is always the biggest hurdle, many see it as giving up, it is not, it is taking charge, knowing that there is nothing more medical science can do for you, it is now working out how you with the help of services can best manage the pain cycle, controlling that gives you more better days than bad, and more stable lifestyle.
My partner has always been involved in my treatment, for that I have been blessed, she has forced the medical profession a few times to look at alternatives, because the approach they were taking was causing more harm. She attended every physio, GP, Pain Specialist and surgeon appointments, nerve blocks, scans, xrays and operations, she has called ambulances and forced me into ER's when I have been stubborn when pain was getting out of control.
My wife has been through a lot when she was young, at the age of 20 she had to learn how to walk again, after a fall down concrete stairs at work, damaged her lower back, we have always supported one another, we have both been together since she was 15 and I was 17, when we met living on the streets, this year I turn 57, we are still as close as ever.


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6 years 8 months ago #20858 by Mrs S
Replied by Mrs S on topic CRPS and My Virtual World
Hi Kim, just wanted to say Hi and welcome.. There is a huge support base here and lots of experienced people who we can learn from.

Comgratulations Don on a great partnership. It must be wonderful to have a relationship where both of you have gone through the rites of chronic pain, and to have the total understanding of how chronic pain has such an impact on life as we knew it.
Hubby is very supportive, but does struggle with the ups and downs of my injuries and pain levels as he has had no experience of his own. We have been together since we were 18&19 and will be hitting 25 years of marriage in October. Our kids are now 19,21,22 and i am so glad that they werent still little and dependent when my accident occurred .
I would say one major problem for us is the lack of libido on my oart due to the medications and pain., which he finds the most frustrating. It didnt help that i spent 8.5 months living and sleeping outside on the couch before i was able to get back to our bed.
Hopefully with the results of the nerve burnings and as my pain levels reduce this will improve.

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6 years 5 months ago #21403 by Rosie
Replied by Rosie on topic CRPS and My Virtual World
Hi everyone,
This is Rosie..I haven't been on for a while. I just felt like I could do with a chat with fellow crps sufferers. I've had a lot going on, with the deaths of my Aunty & Uncle within 4 months of each other. These events have kept my family & I pretty occupied.
I think I last posted I had tried one pain clinic which only offered me some hand therapy, but I was put on the waiting list for another pain clinic since March. I finally got in to the clinic and I was sent out two appointments, going for 2.5 hours each. These are education appointments to explain pain. I'm pretty sure I already have an understanding of pain. The thought of having to sit in a hard chair, for such a long time, really concerns me, as I can only sit up straight for limited amounts of time.
I rang them because I thought if there was some help at the end, that I would put myself through the pain. Upon ringing them, I'm told after the sessions there are different options. You can choose different people you think you need, such as a physio or OT. Or you can go in to an 8 week group program of physio, tai chi etc. I'm just not sure what to think of it.
Meanwhile, over this year, I have noticed my condition has deteriorated. Walking, standing and sitting are definitely harder. I have been getting by with my GP, but have recently tried a psychologist. He didn't work out but I'm considering trying another. I'm also considering accepting my predicament as it is, and using a walking stick for stability. I think I had it in my head if I tried hard to keep walking, I'd get better.
I hope I'm not going on too much. I felt like I needed to share this with someone. I hope you are all doing as well as you can be. I look forward to your responses. Take care.

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6 years 5 months ago #21406 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hi Rosie
Good to hear from you and sorry about your loss of your aunt and uncle. Grief and dealing with funerals etc is very stressful, I lost a very dear friend a month ago under tragic circumstances and my pain levels went sky high following the drive to the funeral and the celebration of life afterwards which I would not have missed for the world. I have been having in hospital 5 day Ketamine every three or four months this year with some good results except the last one did not carry over as well as previous ones, I think because I had so much happening with appointments etc that I didn't pace myself as I would have liked. I also started seeing my psychologist 2 months ago because I felt myself running our of energy to deal with CRPS and the black dog creeping up. I hope you find a psychologist that you like, it is important to be fussy because there will one that is right for you eventually, the right one can make such a huge difference.

You do have a bit of a dilemma with the options in front of you. Firstly I don't think with CRPS as with all CP we can gain much from pushing too hard, we need to find a balance with doing too much compared to too little, I have found a good OT can really help us plan out activities better in order to manage our pain better, a good physio can also help in this area and I have a learned a lot this year from the hospital ones who visit me during my infusions. I would be getting advice on using a walking stick or even a consider a single elbow crutch that would offer more stability and support if you need it; it can be a bit of a psychological hurdle at first but it can also make a huge difference.

The eight week course can be very beneficial to some people and would probably include a course by an OT as well. Can you find out a bit more about it and talk to the physio to see what her/his attitude to crps is? I have heard of crps people being pushed too hard which doesn't work for us, we need to be allowed to set our own pace, by talking to the physio you might get a better idea of whether you will fit in and whether the benefits out way any possible negatives. This is all my opinion and based on having started one of these course and pulled out! -failed- and also other crps people, some gaining hugely and some not.

I hope this helps, keep in touch Rosie, let us know what you decide, PM me if I can help by more personal contact. I am in hospital next week for another infusion but will still get my emails on my ipad.
Best wishes

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6 years 4 months ago #21418 by Rosie
Replied by Rosie on topic CRPS and My Virtual World
Hi Josie,
Thanks for your reply. Sorry to hear about your friend, I know how hard it can be having extra stress, with this condition.
I do feel a bit up in the air about things at the moment. I do feel my condition has deteriorated, which has pushed me in to deciding on getting a walking stick and considering seeing another psychologist. But I am feeling weary of the pain clinic, after my last experience, where I was offered no further pain relief, just an OT for my hand. I'll definitely consult with my GP first.
I do like your ideas of getting some help with pacing, as it seems at the moment I'm unable to cope with as much. Having some advice may help. And I'll talk my doctor about the walking stick, if he thinks it's suitable.
As with the eight week course, I'll run it by my doctor, but last time he told me that program wasn't suitable for my needs.
Anyway, good luck with your ketamine infusion. I hope it all goes well and you get the results you want. I will try a personal message if I can work it out!!!!!!
Take care,

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5 years 1 month ago #24756 by Peter
Replied by Peter on topic CRPS and My Virtual World
Bumping Up!

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)

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