[KathyUK]

Hi everyone

I had my pain clinic appointment finally yesterday. I got to see the consultant rather than his registrar. He was really lovely.

He started by addressing my medication and said I should have a "holiday" from pregabalin and duloxetine and can come off both within a fortnight, so I have started that already. He said there are no other options medicine wise for me now. That was a bit depressing to hear but then I am sick of being on ones that don't work.

He then talked about my diagnosis of CRPS, he said while I have it, it's more of a "label" than a diagnosis, and he said he wouldn't consider it my main diagnosis. When I asked him what he would consider as my main diagnosis, he said that would be addressed in the pain management programme he'd like me to do. I presume he means I will learn to live without a diagnosis.

So yes, he's put me forward for the PMP, which is great. However, things went even more downhill from then as I asked him about the SCS. He said that I should not get my hopes up at all about getting an SCS as they are not suitable for someone with pain as widespread as mine. He said if I'd had pain in one limb rather than two (and my back), it might have been an option. So I was totally gutted by that. Tried not to show it.

Then I asked about what he could do to help me with the sex issues. He said I would get counselling as part of the PMP to learn to live without it.

On the way home I cried a bit and realised I haven't gained acceptance of this at all. I am not going to get my pain under control, I'm not going to get my legs back and I am going to have to face the idea of getting a wheelchair. I have high hopes for the PMP for being able to cope with the pain but it's never going to not be there. I am excited to do the PMP, and am grateful for the opportunity and for his honesty at the appointment but it's never easy hearing what you don't want to hear, is it. I really thought after all those suggestions of the SCS from other docs that I had something to look forward to, and the neurosurgeon had said it could give me a lot of mobility back and now that's gone. I have to pull myself out of this funk as I hate being depressing.

Kathy
xxx

[Brambledog]

It's such a hard road this one hang in there Kathy....

I've felt just the same after a similar appointment. I can't help hoping when I get those appointments, hope that she will have a new plan, a new treatment option, just a chance that it isn't always going to be like this... I try so hard not to hope for that, but I think that's just human nature! Besides, giving up all hope would NOT be a good move either.

Counselling does help, and the PMP, more than I ever thought it would. I still feel scared and depressed sometimes, but you do learn to cope with it. Part and parcel of living with a long term chronic condition. Hang on to the support and the hope, and keep an eye on research papers, because one day someone will come up with a treatment that really helps, and your doc might not hear of it. You always have to be prepared to fight for something you really think might help.

The SCS is a tricky one. I've read such a lot about them, and although some swear by them, it does tend to be a treatment for a particular area. Mine is all in my left side now, and my doc said similar to what yours did. It is gutting to know that you aren't a straightforward case and that you just have to get on with life and try not to let the CRPS rule your life. I am also off all meds except lidocaine patches for occasional use, and it's ok. The side effects of them can cause a lot of problems, and I know now that they weren't really doing anything much for the pain, I just hoped they were. Kind of placebo thing I suppose... I feel better in myself without their side effects

One last thing I have to say. Don't give up on anything totally. Doctors aren't always right and you need to find a level of hope and determination that you can deal with without feeling disappointed alongside it... It's a balancing act. Sorry I can't help more Kathy, but you're strong and you'll be ok.

All the best,

Bram.

You take a real chance having an SCS, most of the top US specialists have stopped ussing them. 60% of sufferers get RSD at the incision site. 50% have to have one or more further ops due to wires moving or duff batteries. If you didn't get it the first op there is a 60% chance you wil during the next. If you did then it will definetly make the RSD worse.
I think you've had a lucky escape

[KathyUK]

My CPRS is already where the op would be, so I'd already weighed it up as worth having if offered it, but obviously it wasn't meant to be. I'm not really in a place where I'm able to see it as a "lucky escape", and I'm not saying it was or wasn't by saying that. I just don't see how losing the last available option was lucky, even if it was proven that option had risks. There are lots of things that could make my CRPS worse (my numerous falls would be one of the main ones), but none of them have the potential to make anything better like the SCS could have done (had it been suitable). I'm sorry if that sounded harsh, it wasn't meant to at all and I genuinely appreciate you posting.

Trying to see a plus side, I am off the Cymbalta without any withdrawal effects, if anything I feel better sleepiness wise. Come down a lot from the Lyrica too, but that's the easy one for me. And at least I won't have to worry about security machines in shops.

Back to wondering about my diagnosis and thinking of acceptance as a Dr Phil type concept, but at least I had a fortnight where I thought I had both finally. Was nice while it lasted!

[KathyUK]

OK so I never heard back about the PMP that the consultant told my husband and I that I would be starting within the month. He said we'd get a letter within a fortnight and he ran the course so I'd start nearly immediately. What a load of tripe, his secretary told me on Friday that I will be lucky if it's within a year as the waiting list is "months and months and months". She said we must've misheard but that's a copout as Baz asked him specifically how long it would be before I actually started, and he said in return just as specifically that it would be within a month. Baz is fuming. I've given up, I'm not going back to them now. They've really blown it over and over.

I am going to ask the GP for another referral as I don't agree with anything the pain clinic consultant said about SCS or about my meds. I might ask for a referral to Bath, or locally to North Tyneside, or both. I also have to face OT today and ask for a bloomin' wheelchair assessment. Acceptance. Pfft. Not likely.

[Brambledog]

Originally Posted by KathyUK

OK so I never heard back about the PMP that the consultant told my husband and I that I would be starting within the month. He said we'd get a letter within a fortnight and he ran the course so I'd start nearly immediately. What a load of tripe, his secretary told me on Friday that I will be lucky if it's within a year as the waiting list is "months and months and months". She said we must've misheard but that's a copout as Baz asked him specifically how long it would be before I actually started, and he said in return just as specifically that it would be within a month. Baz is fuming. I've given up, I'm not going back to them now. They've really blown it over and over.

I am going to ask the GP for another referral as I don't agree with anything the pain clinic consultant said about SCS or about my meds. I might ask for a referral to Bath, or locally to North Tyneside, or both. I also have to face OT today and ask for a bloomin' wheelchair assessment. Acceptance. Pfft. Not likely.

Good for you Kathy - keep your sense of humour, even if at times like this it has to be a bit dark and sarky lol

Try to see that OT appt for what I now see mine was (I dreaded it too, believe me...) - it is the first step to you reclaiming a large part of your life. Namely fresh air, distance, and speed! Don't leave that OT office until she's agreed for you to have the assessment, ditto the GP if you have to actually get the referral through them. Hold your head high and sod the lot of them

Good luck, and I totally agree with getting another doc referral, that lot sound like a complete waste of your time and energies. I'd write to them though, and point out a few homes truths...

Onwards and upwards. Don't let the b******s grind you down!!!!!

Bram

[catra121]

Oh Kathy...I'm sorry to hear all of this. Keep fighting for yourself. Being your own advocate is the only way to get anything done.

I had a long run of bad luck with doctors including my GP who had been my doctor my entire life. Literally was the one who delivered me. But nothing was happening...nothing was getting done...and I was just bounced around from one doc to the next. Well...one appointment he told me I might just have to get used to being in a wheelchair. DONE...that was it. I got in the car, turned to my mom, and told her I was making an appointment with another doctor ASAP and I made the call on the way home in the car.

Things started to turn around for me at that point. Don't get me wrong...I still have RSD...it is still terrible...but I have reclaimed my life. Some might look at my choice to be off almost all meds except clonidine patches and Lidoderm patches as giving up but I haven't. Some might look at that and think that it can't be that bad if I'm not taking anything. But the bottom line is that the meds at their best helped a LITTLE...and that just wasn't worth all the side effects and the long term effects of the meds for me.

My new doctor got me to specialists to rule out a bunch of other stuff before we settled on it being RSD spread to my upper body. Then I got a wonderful at home physical therapist who quite literally saved my life and gave it back to me. Between the doctor who was willing to work WITH me and try new things and the physical therapist I ended up being very lucky. I use a walker now...but I'll take that over a wheelchair any day. BTW...not saying there's anything wrong with a wheelchair...you get whatever YOU need to take back your life and freedom...just that for me personally it was my motivation to keep pushing hard in physical therapy to say OUT of the wheelchair.

My doctor also worked with me to explore treatments like tDCS and small things like changing my diet. The approach we took once we realized the RSD had spread and was the culprit was to tackle the individual symptoms as well as making life changes to tackle the RSD. The pain...that is what it is and I have a good handle on the triggers and what I can do to reduce those as much as possible. So we made a list of the symptoms that were preventing me from living a "normal" life. The first ones were the dizziness, blurry vision, balance issues, lack of sleep, lack of endurance and strength, etc. The physical therapist and I worked on the physical things in therapy...the walking, endurance, and balance. My doctor and I worked on the others. Tried different medications until I brought her some research on the clonidine patches working for dizziness, blurry vision, etc. So we tried that and it worked.

She was also open to other things like tDCS which I feel was incredibly helpful in getting me to where I am now...especially with regards to sleeping better. The change was slow...took about 2 months of use of tDCS before I saw any change...but I slowly began to sleep longer without waking up. This was after a year of no more than 3 hours a night and rarely more than an hour together. It doesn't work for everyone...but this was huge for me and nothing else worked.

So just keep on fighting. Not every journey will look like mine (most won't...I'm pretty sure) but I had to make some tough choices along the way and face some hard truths. Once I accepted certain things I could start focusing on the things I COULD control as opposed to the things I couldn't. You cannot force the doctors to do ANYTHING...and some of them will do nothing. But there are always things in your control that you can fight for. It's hard when you have RSD because...quite frankly...it's exhausting to fight so hard for these things day after day when you already feel like garbage. But if you can do it...you will be happier in the end and hopefully get what you want.

Sorry...I do tend to go on and I apologize. Just...take care and keep fighting.

[SloRian]

That sounds like a wonderful doc you have, catra!!

[KathyUK]

Thanks Bram and Catra - it was a really tough day yesterday, looks like it will be today but at least I got a little bit of sleep. Was pre-emptive with the adult sleeping issue, had a romantic night with Baz and thanks to a bit of initiative and care not to hurt me, that helped a bit sleep and pain wise. Was easier to get to sleep, but staying asleep was very hard with the muscle spasms. I honestly don't know what I'll do when I inevitably get too sore to save that last diazepam tablet. While it didn't take away the spasms totally, it did really knock them back a bit temporarily. They're only 2mg tablets though. I really hope the GP will consider prescribing them tomorrow when I see him, but I can't get my hopes up after previous issues with him. I am going to try and get round it by just acting as if they're normal prescriptions for me, as while the pain clinic didn't prescribe them, the hospital did when I was admitted.

Interested in hearing more about other UK-available treatments so I can keep pushing for some help. Maybe if I say what my issues are, and what I've had, you guys might have shared them and have tried something I haven't. Having read posts here and on UK forums, I know it's rubbish that I've had "everything" like the pain consultant said and I don't know if I'll ever stop ranting if I start on his comments about other opiates being exactly the same as buprenorphine and how if I'm tolerant to one I'm automatically tolerant to all. He even said Palexia was just buprenorphine with amitriptylene added. Gah, must stop ranting, not good for me.

So the issues I need addressing somehow are:

Obviously the burning nerve pain - when I saw pain consultant 4 weeks ago this was in my thighs, lower back and groin. Within the week of seeing him it spread to below my knees. Now it's right down to my feet, with my right side being all the time and my left exacerbated by exercise. Yesterday it started in my forearms - I have had numbness issues with my hands for years that have been relatively ignored by the pain clinic (well I suppose it wasn't pain was it).

Intermittent swelling of the feet, knees, calves - this was only a mild issue when I saw him but I didn't even get to tell him as he wasn't receptive to listening to any of my symptoms. Since then my feet have been swelling more and so has just under my knees. Also had colour changes - my left foot went purple in an epsom bath and the other foot went see through white. Last night and this morning my forearms were lobster red but not swollen.

Back pain - this he says is nothing to do with CRPS, but is the original issue I went to him for and the buprenorphine isn't touching it any more. It is however neuropathic (as there's nothing mechanically wrong other than the teeniest bulge where I had my microdiscectomy, which is not causing symptoms apparently).

Numbness in my hands.

Weakness in legs.

Unrelated (?) achilles tendonitis in both heels due to a lump in the heel bone. I think this has allowed the CRPS to spread though. Can only wear hideous Crocs lol.

What I have tried over the years is Diconal, Diclofenac (can't have NSAIDs now), Amitriptylene 5mg, Gabapentin up to 2700mg IIRC, Pregabalin 350mg, Oramorph 10mls (worked for the backache and partly for the burning), Cymbalta 60mg, Diazepam 2mg (works a bit on spasms). I have an NSAID gel for my heels which doesn't do a right lot.

I'm currently only on buprenorphine and have a tiny amount of diazepam (one tablet) and Oramorph that the doctor probably thinks has run out. I am utterly terrified of it going!

I have had hydrotherapy (worked wonders for back pain), physio (made things worse as I had herniated disc at the time), but both of those were 4 years ago under a different doc in a different county, I have not been offered either here. When I asked for a physio referral so I could try hydro again, the GP gave me their number and asked me to ring them and tell them he was too busy to refer me and see if they'd let me in anyway - that's not how it works so I will be pestering the GP again. Also need a podiatrist referral for my feet.

Who do I ask for a referral to? I am definitely asking for a referral to another pain clinic in the area, as opposed to a different doc at the same one. Have spoken to others who have left my pain clinic to go to the other for similar reasons. Do I ask for a neurologist referral, or maybe a rheumatic specialist? My sister has been going through problems with her back that started fairly similar to mine (without the CRPS) and she has seen the rheumatic specialist and has been diagnosed with palindromic rheumatism and an "emerging connective tissue disorder" and she thinks it might help me to see one? Autoimmune things seem to be a bit rife in our family lol - both parents have newly diagnosed Type 2, my twin has Type 2, another sister has Raynaud's, my Dad has RA. I am negative for RA but had high smooth-muscle antibodies (with no accompanying liver issues). GP wants me to retest as I came down with flu just after the test.

The other option I have is to ask for a referral to the Bath Centre for Pain Services, a national centre that specialises in CRPS, but I don't know if that's a bit OTT? http://www.bathcentreforpainservices.nhs.uk/

It's a long way to go and we don't have our own transport so it would be coach/train and hotel. We are on a very low income.

[Brambledog]

Hi Kathy.....whew! I hope you're taking a list with you!

Ok. First thing that popped out at me was the Bath Pain Clinic. I am currently on the referral list as apparently it can take six months to get in there, and you have to have an initial interview....be assessed....blah blah blah...lol. I did a lot of reading about Bath, and there isn't much info apart from the site itself, and that is fairly thin on quantity of the sort of info you want. In the end I discovered that on a typical course, there will maybe be 2 or 3 CRPS patients max. All the rest are elderly patients struggling to cope with arthritis. You do not have your own room, but are in a big ward of about 20 patients. You are advised to take earplugs as the wards are next to a very busy street, and also many of the patients have sleep issues of one sort or another. As part of the course, you have daily hydro, physio and psych sessions, and in between are expected to be in the gym pushing on with the physio exercises.

To be honest. I've been very put off by the fact that it's not a dedicated CRPS course - I'd sort of been led to think that it was. And the idea of not sleeping properly for two or three weeks while going through such an intensive course that is going to inevitably increase my pain at least in the short-term is just not as appealing! I love the idea of having hydro, physio and psych, but I hoped to feel part of a group of similar people, not feel even older and more hopeless as I spend all that time with mainly old folk who at my age were at least pretty active, healthy and fit.... A good plus though is that they do have some ongoing studies into CRPS, although they don't offer the option of trying any other treatments other than the physio and hydro. Have a read around yourself and see how you feel. It's apparently very expensive, so your doc needs to be pretty persuasive. Although I don't feel it's for me at the moment, you might well feel differently. My doc said she would start the process in case I changed my mind later

I think you should definitely see a new pain doc, so push for that referral. So much of your list sounds like the kind of thing a GP is going to try and duck, they just don't have the expertise, time or budget to deal with it all. A dedicated CRPS pain doc should be much better placed to help you find a way through. The physio referral should be easy for him though, and he needs to 'find a pair' and do that properly for you.

I really hope you get some help and answers today, and that he at the very least gives you something for your 'breakthrough' pain. I'll hae my fingers crossed!!

Good luck,

Bram.