I am seeing my GP today to ask him for a referral to a pain management clinic I've found in my local area. Just goes to show yet again how awareness of interdisciplinary pain management is so poorly recognised within the local medical community as I have seen several specialists and my GP in my local area over the past couple of years and not one has mentioned this pain clinic. I only found it through Google research myself.
I have been looking over the clinic's website this morning further familiarizing myself with their services and printing out any relevant info to take to my GP as he needs to write the referral.
I have participated in a pain management program earlier this year and that is how I learned about ACT, Mindfulness, Pacing, Goal setting etc to help with psychologically living with CP. However, the pain physician was unable to help me after a couple of visits due to my intolerance of the usual gamut of CP medications. Graded activity became a problem because that included increasing socialisation which flared up my jaw from the increased talking and was stopped on the advice of my oral specialist. I have continued to see the pain psychologist who has been a terrific help with techniques to keep me psychologically afloat. However, this clinic is far from my home, so is not able to plug into local ancillary services including recommending a GP with CP experience.
However, with not being able to tolerate any painkillers or other medication and now having to wean off the Paxam which was the only thing that helped a bit with the jaw pain, RLS and sleep, I'm left in a no man's land with external intervention in managing the pain during flare ups apart from the psychological approach which, and don't get me wrong, is a valid and very helpful tool, doesn't always cut the mustard when your pain levels get up so high with no reprieve.
My feeling is if medication is not an option, then other ancillary methods could be possibly helpful such as maybe hydrotherapy for example. The fact is that the RLS causes muscle pain that is with me day and night and I can't sleep because of it. It also worries me that the neuropathic pain is spreading and not being monitored (someone mentioned about water running in their legs. Up til recently, I've just had electricity, muscle pain and agitation in my legs, now my feet feel like they have cold water running through them, but at the same time, there is a sort of burning sensation that goes with it (weird feeling!). This progression and the lack of monitoring of it by anyone currently worries me and this adds to the stress of the CP....and the legs and feet issue is just one of many that I am experiencing either not improving or degenerating further.
It's this feeling of these things currently existing in a void that has led me to research and find this local pain clinic (still can't believe it's been on my doorstep since living here for 3 years and never knew about it!)
The anxiety is from having to see my inexperienced in CP GP about it this afternoon, the fear of bringing further new fingers into my complex pie as the doctors at this new clinic will have their own opinions and ways of doing things, fear of going down a further path that may worsen my situation (this clinic offers a lot of interventions such infusions, blocks ets...but my reactions to chemical intervention lasts for a long time afterwards and some of the the side effects have become irreversible eg. the RLS which I never had prior to starting Lyrica last year) so any intervention like this can have long term consequences for me.
However, I cannot continue in this no man's land of unmonitored and disjointed treatment. All I want is someone, well versed in CP, to make a bit of an overall treatment plan that coordinates and communicates with the external oral specialist and neurologist treating my migraines with Botox, who can look at non medical options to helping with the muscle pain etc, can review if the medication option door is truly shut, and basically help me to feel not so alone with all of this....but at the same time, not go making things worse with interventions that stir things up from adverse reactions.
I can feel your anxiety! I agree with you about the medication side of things. You have to have some kind of medical control to enable you to undertake other activities. However, the less the better. I am not sure what the answer is to the sensitivity side of things - it is a big thing because most of us seem to have drug sensitivities of one kind or another.
I also had to find something to help by myself. Apart from neuropathic pain, I also have a severe form of Osteoarthritis. The course that eventually helped me so much was, at the time, run by Arthritis SA. You would think that GP's would be aware of that and refer people there. But, they don't, even when they know of its existence. I have seen brochures in my GP's consulting room and I asked her if she sends people there and she did one of those lovely side steps that they are so good at and didn't even answer my question. Not that it would do much good now because Arthritis SA has, in its wisdom, decided to cease running the courses in favour of a two week "quickie" that they have written. Pain Management courses must be interactive if they are to be successful. Telling people what they should be doing is not as effective as having them learn to self-manage their condition and form a partnership with their health professionals. As you know Fee, goal setting, pacing etc. might sound boring, but, along with relaxation etc. it actually does work.
I don't think that you will have any problems getting your referral. As far as I know, they can't really refuse you a referral for something that you ask for. Especially something like this. I will be thinking of you today. Let us know how you go when you feel up to it.
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
Fee why are you putting yourself through hell by going to see your old Gp?? He's doesn't know how to handle your deteriorating cp situation. Why can't you just go to any gp and get a referral? And yes I understand your concerns and frustration regarding unco-ordinated treatment because as you know that's what's been happening to me. I think most drs don't want anything to do with w.c because they don't want to be involved in a court case (if there's one) that they might be questioned about their treatment. This is what I've realised because you can see the look on their faces when you tell them what happened,regarding how the injury happened and then my opinion is-they don't want to give an opinion. It does sound like you have neuropathic pain in your legs and they're are calling it RSL, maybe it wasn't from the Lyrica? That could've been a coincidence or timing.
Fee it's sounds like you have crps and its spreading to your legs (neuropathic pain)and maybe going to hydro-therapy will help like it does while your in the pool. I haven't been going for a couple of weeks because w.c won't pay anymore but even though I sometimes feel worse after exercise and I can hardly walk-kind of stiff- I think it's beneficial to build core strength and it gets me out of the house and I find it beneficial for my current depression and building muscles in my legs. My calve muscles are just so painful that it might help to tart stretching them again because being inactive hasn't been helping either. We've got to try everything Fee.
Gee,I wish I had the answers fee though I don't last Friday I was also cut off from my private rehab people who I met up with twice a month, one to help me look for work and the other person to basically relay any info I said back to the insurance co.
the biggest blow is being cut off from my pain psychologist. That's wrong. I think I need to see a physiologist because I'm becoming immobile with laying down most of the time. I'm worse in the cold as it is today though my feet are burning up and I'm having chills to my body and I was sweating as per usual most of the night even though it was a cold night.
All I want is a proper diagnosis! The health system has let me down.
I hope the pain clinic can help you Fee I totally understand where your at.. have you tried cranial sacral therapy ? I've had it done a few times early injury days and it took the edge off my pain until I returned straight to work to sit. I felt like I was floating and I could feel the spinal fluid going down my back, it was a surreal feeling. Goggle it most osteopaths do it and I just read its used for a variety of illnesses. I'll have to try and copy and post the link later ATM I'm laying in bed with my iPad.
I'm going to make an almighty effort and go back to hydro-therapy today regardless of the cost. Did you go o court Fee? I don't really feel comfortable about talking about it on the forum so if you're like me, feel free to get my email address from Peter and we can talk privately if you want too.
Omg the journey continues I was so stiff this morning I could hardly walk. It's just so exhausting I hope you find someone helpful compassionate and understanding at the pain clinic Fee...
I feel like I've been rambling on a bit. sorry bout that, I don't feel like I've been too helpful...xxxx Eliza
My heart goes out to everyone waiting on pain clinic and sad to say I'm in the same boat.
Sent the results back for my SI block 2 weeks ago, followed up with a call last week and same again today. It's a private clinic.
I'm in no-man's land too. Been sort of managing by sticking to large doses of naprosyn, but the side effects from that are getting to be too much. I feel awful! Sigh.
Hmmm...wc Eliza; court case adjourned for another 9 months due to opposing side not being full prepared.....!!!!!!!!!....#%#....
It's not so easy going to another GP because what I have found with a conference with my barrister is that you are held accountable for every change in doctor that you make or else the court sees it as 'doctor shopping'....hmmm...no mention of incompetence dissatisfaction is taken into account for some reason!
Also, I've been to 3 GPs now who haven't had a clue about CP and the prospect of pot luck trying more in the area...well; that just feels exhausting thinking about it! That's why I'm trying to save myself some more grief and energy by doing a bit more homework this end and try to see if by hooking into the services at the local pain clinic, they may have a local GP they liaise with who I can move to instead. Also, here in Vic, we have to get a certificate of capacity signed off by your GP once a month and it has to be the one that is managing your case, once again not making it easy to chop and change because a new GP wants to get to know you first before signing off on such a thing.
Yes, Eliza, CRPS has crossed my mind and that's why I don't like leaving this unmonitored. It only brings extra fear and stress into the equation. It hadn't actually occurred to me to bring this up with the neurologist because we have been so focused on getting the migraines under control with the botox, so the visit is usually focused on that. I will ask him at next visit. I tend to get the feeling that even specialists specialize in particular areas (I know his is headaches and migraine) so I don't know if the neuropathic pain or CRPS is on his radar so will have to find out.
Sorry to hear about your own struggles. I think that sounds like a great idea re the hydro therapy. I have been taking a few steps lately that I will be paying for myself not because we can afford it (which we can't), but because sometimes with your health, you've just got to take proactive steps for peace of mind (and possible relief of pain) because the stress of waiting for months for wc approval on some of these treatments can add a whole further layer of depth and dimension to the pain we already suffer.
From one bed to another (the migraines have really taken their toll this weekend...there's kind of like a hangover effect afterwards), empathy hugs.