Pain clinic update
 

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

It's such a hard road this one :rolleyes: 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. :hug:

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

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. :rolleyes:

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!

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. :rolleyes:

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 :winky:

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 :D

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 :grouphug:

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.

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

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. :confused: 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.

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 :rolleyes:

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. :grouphug:

I know you've had issues with the doctors in the past...particularly not listening to you and you not even getting to go over everything you want to talk about. I had a couple of similar experiences and a couple of things helped.

1. I came into each and every appointment with 3 sheets of paper. One was a timeline of when everything started, key dates like any treatments, meds tried, docs seen, etc. This was mostly for my own information and to remind me of everything going on because it's a lot. The second was a list of symptoms, very detailed. I would pull this out every appointment and when the nurse or doctor asked me what was going on I would go through the entire list of symptoms...every time. It's hard to remember when you have SO much going on all the different things you are going through. And the third thing was a list of questions and things I wanted to go over with the doctor. I would not let them leave until we had gone through each and every thing on my list...otherwise what am I paying for exactly?

2. If you can bring someone with you that seems to help. Educate the person you are bringing on what your list of questions is and what things you want to go over. If they can have a copy of it or a notepad to take notes then that can help. That will make two of you to make sure ALL your questions and concerns get answered. It needs to be someone who will speak up for you and call the doctor out if they try to leave. I am amazed at how many doctors try to sneak out, saying they'll be right back, and then the nurse comes in to get you on your way. I've told the nurse before that we were not done speaking to the doctor and would not leave until he came back and finished the conversation. With someone else with me this has never failed. On my own...they can sort of be bullies about it. One of the best things about my current doctor is that she really does take all the time with you that you need without any of the "tricks"...genuinely cares. Of course that means sometimes I have to wait an hour after my appointment time to actually SEE her...but I want her to take that time with me so I wouldn't deny it to any other patient.

3. Take notes while you talk or have the person you are with take notes on what the doctor says. They seem more likely to be helpful in these situations.

I really hope that you can get a referral. Sorry that I don't know more about the doctor in your part of the world who can help. From what Bram said...the Bath Pain Clinic doesn't sound like a good fit...but only you can really judge that for yourself. What you want is a doctor who specializes in and has treated a lot of CRPS/RSD patients. This could be a neurologist or a pain management doctor...the pain management doctor would be more likely to address your specific issues regarding PAIN and trying to get that to a manageable level. That doesn't mean that they will tell you what you want to hear regarding treatment...but you should never be with a doctor who feels all options have been exhausted.

Sometimes, often times, with RSD it's about finding the right combo of meds as much as anything else. This can be a VERY long process so I just don't understand why any doctor would give up on a patient. I'm sure it can be a frustrating process for them as much as for you when it takes a while to find the right combination of therapies (meds, physical therapy, therapy to help you cope, etc...whatever you need) to make your quality of life better.

That said...I know I have had to figure a lot of things out on my own and I take that responsibility very seriously. It's not all on my doctors...I have a series of things I do every day to help with my pain levels. Hot baths with Epsom salts, ultrasound heat therapy after the baths, heating pads, wearing gloves and scarves to avoid triggers like air movements and cold things, PT exercises to keep me moving even when I'm sitting, eating the right sorts of things and avoiding things that can be triggers, changing the way I do things to make them fit my limitations and not being stubborn about HOW things get done so long as they get done, using the walker, sitting when I need to, etc. It's a process and not a quick one. It took a long time for me to sort out all the intricacies of what my triggers are and what I can do to work around them...and I still have to make adjustments all the time. But those little things can make such a difference in my overall ability to make it through each and every day.

So...get the referral and work on getting better care. But don't stop there...there's so much YOU can do (and you probably already do a lot of it but keep working on it) to make your quality of life better. Just understanding your limitations and keeping an open mind can be such a big key in this process. Keeping a daily journal can help with this and can even sometimes help you see patterns is what is causing your pain that you might not notice otherwise.

Just an example (and I'm not saying it is right for everyone or that you should get one)of one of the big things that has helped me is getting a walker. You'd be amazed at how many things the walker helps with for me. It takes a lot of weight off my foot (initial site of RSD and worst)...which I find helps a lot. It keeps me steady and I feel safe because I'm not going to fall with it. I can walk normally (I have a 4-wheeled one) and that gives me a normal gait so I'm not messing up other things like my back or hips or anything. I ALWAYS have a seat with me so when I need to rest I can. It has a little bag under the seat to help me carry things without causing me any extra pain at all. I can kneel on it when I need to "stand in place to do things" like the dishes. Sometimes even if I stand and stop to talk to someone or to look at something I might put just my bad leg up with my good one down. Or I might just sit because that's what I need instead of standing. I don't tire as easily or as quickly when I use the walker so I can do more, go out more, and last a whole day on my feet instead of just 30 minutes or so without it. I've even scooted around on it a little while seated when it was particularly rough and I couldn't walk hardly at all (hasn't happened in a long time but it was an option). It keeps me mobile and makes my life easier. Is it the answer for everyone? No...I just use it as an example on how I have adapted and make things work without making it HARD on my RSD body.

I got my walker on the recommendation of my physical therapist but it was on ME to figure out how to make it fit into my life. I got it off amazon.com for just a little over $100 (got one that was made for shorter people with bigger wheels and would be easy to fold for getting in and out of the car). No one did this for me...it was on ME to make it work and I feel like I have squeezed every ounce of usefulness out of the thing to make my quality of life better.

While you wait for the doctors to get their act together see what you can do in the meantime on your own. If you can find a doctor who can work WITH you through this process, things will get a lot better. Take care and good luck. I wish you could get to see a new doctor ASAP but it sounds like you may have a wait ahead of you. Don't give up...things CAN get better.

Oh you two, what on Earth would I do without you? :grouphug: Getting a bit tearful here!

I think we'll put Bath on the backburner, it's probably the only place to get to see someone who has dealt with a decent number of CRPS patients, but I am hopeful about the other local pain clinic, if I come under their umbrella. I hope so. I have spoken to people who had the same issues with my current clinic who now have the SCS and haven't had a year long wait for the PMP either. Sounds like they listen more there.

Catra your advice on appointments is so good and I hope others take heed too. I really don't want to sound negative by saying sadly that's pretty much exactly what we did for this appointment, but he wouldn't hear or read the symptoms list and seemed to think it was funny I had prepared so much. The only thing that wasn't maybe as prepared as your suggestions is that while I had Baz with me to back me up (and at the time, him getting a solid answer about the wait for the PMP felt like that had worked, if only the doctor hadn't told a fib to get us out of the door!) he is blind and therefore can't use a list as reference.

Someone gave me some great advice on dealing with doctors, about sticking to "This is what I need, how are you going to approach it" and sticking with that until an answer that fits is made, politely of course. Tried that, he just wanted us out and would've said pigs fly if it got him out of dealing with me. I am however going to try a mix of that method and your suggestions tomorrow with the GP.

I have to admit I am really very scared. I feel like this CRPS is running rampant, spread (if it is that) is happening very fast. To go for 4 years with it in your outer thighs for it to spread inwards just before Christmas, then below the knees last month, then to the feet last week (although I've had foot pain for a long time that wasn't CRPS-like) and to my arms, upper back and collar bone areas over the last 24 hours is scary.

I knew I wasn't really up to being up and about today, but I had promised my sister I would take my nephew to his CAMHS assessment as she had a conflicting appointment. She gave me directions and told me it was a "5 minute walk" from the bus, it wasn't, even for 'normal' people it was a good 20 minute walk, and by the time we were there my feet were gigantic purple balloons with pins and needles, itching and burning. I was fairly well medicated in preparation back-wise but my spasms were so bad I couldn't move after and I've been lucky that my son got me back to bed. It was terrifying having to get home on the bus afterwards and I didn't have my phone with me so I couldn't call for help. I thought I was going to faint. And someone was talking about me on the bus, some fanatical Catholic - I currently have blue hair and piercings so it was pretty much some odd generalisations about "evil" and me getting paid for it by God, loooovely. She did sound senile though so poor woman.

Walker wise I do have a hideous and annoying NHS one and need to save for a better one with bigger wheels that you kindof walk 'in' rather than pushing out ahead of you. Better shock absorbency is a must. It seems a bit strange to me that the various makers are way behind pram companies who seem to have got it right. Of course there's the Trionic ones but at £800 I think they're a bit out of my league (that and they're bloomin' huuuuge). I've found one for around £100 but with 3 teenagers and what have you, it's hard to justify still. I have to face the potential of needing a wheelchair but it's another thing I keep backing out of addressing - my parents scoffed at me when I mentioned that OT had suggested one, I don't tend to see them when I'm bad so they are obviously making the mental leap from seeing me with a cane and playing things down to me being in a wheelchair 24/7 which isn't what anyone wants.

I need to address the family side of things too as today shouldn't have happened, my twin could've rearranged her other appointment a month ago when she knew they clashed, and I shouldn't say yes to everything. She's a single mum with 5 kids so I do want to help but I saw her yesterday, she saw how bad I was and said "Are you sure you're up to it?" and what did I say? I am such a plonker! But I knew that if I didn't say yes then she wouldn't have a plan, she's struggling and needed me. The downside of being honest though is that it scares people off and I become isolated, or the "moaner". I hate the thought of people thinking I'm putting it on to any degree, and I don't want anyone thinking "I won't talk to Kathy about it because she's got enough on her plate". I don't want to be alone and Baz is out so much with his courses (which is great), I don't have any local friends at all. My twin is my closest friend and so it's easy to let things get over the top in supporting her because she's not very receptive to others' needs while she's so worried about her kids. They lost their dad (my husband's brother, yes twins married to two brothers) last year suddenly to alcoholism, and I just want them to be okay. Her kids are as close to me as mine and they are suffering, more so as my twin and their dad had split just before it happened so there were no goodbyes, noone was expecting it despite him having been ill for a while. Obviously Baz is grieving heavily too, and so I don't like making a big deal of my problems when he rarely talks about that, typical man trying to deal with it all.

Oh dear God, look at how much I'm pouring out today. I am so sorry!

Awww Kathy....as if having the CRPS wasn't enough on your plate...:rolleyes:

:grouphug:

I do understand at least partly, although luckily I haven't had to deal with family bereavement and all the stress that comes with the fallout of that. You are obviously trying your damnedest to be Superwoman, and obviously in some area you just aren't going to be able to do everything you want.

Pick your battles girl! Talk to your twin, explain that you want to be there for her and you're trying your best, but maybe some things are just not possible at the moment - with your pain levels ramped up at the moment that sort of journey and stress are bound to have nasty consequences. Maybe you could offer to look after the kids at your house for a while while she has some time to get things done instead? I'm sure youve thought of these things already lol...sorry if I'm stating the bleedin' obvious!

Your doc sounds like an ***. I strongly suggest :winky: that you start looking for a new doc - maybe try writing to clinics in the area asking if they have a doc who would be interested in taking your case on. Someone out there might have an interest in CRPS or just like a challenge and be prepared to help you fight this thing?

Don't give up hope on the spread thing - reading between the lines of your various posts, you have a LOT of stress and worry going on in your life right now - and CRPS and stress are not good chums... There is a decent chance that your current higher pain and spreading symptoms are down to that, and not 'true' CRPS spread. I know that a few months back I was having symptoms in my left arm and shoulder, including the redness, tingling, swelling, pain, weakness, numb fingers, all the fun stuff....but that has completely gone now. At the time I was very stressed because of life crap, and now that I'm happier again the CRPS seems to have subsided from that area. I'm sure that my left arm is vulnerable to it spreading there, but it's not there yet....fingers crossed. My leg and both feet is quite enough!

Maybe stepping back a bit and easing some of that stress off you would help with your pain more than any med? It sounds like you have good support from Baz and your twin sister, you just need to talk to them about what's happening with you at the moment and explain that you need to get your CRPS back under some kind of control - and that to do that you have to step back and calm your life down a bit. They'll understand that it doesn't mean you want everything done for you, nor that you can't help out, just that you have to plan things more and be prepared so that you can live within your limits for a couple of weeks...

Hark at me :rolleyes: lmao - my own life is a mess at times!!!!

I hear you on the no friends thing....mine have drifted off and there isn't one person I could call and say come over and watch a film with me while I distract myself from this hell... It's horrible to accept that you aren't an easy person to be friends with now, and to realise that some people are so weak and lazy that they can just wander off when times get tough and not look back. My best friend is still very close, but she lives in London and we only see each other maybe twice a year...maybe that's why we are still so close!

Thank heavens for this site and some really REALLY good people who understand....:hug:

Hang on in there girl, you are not alone. You'll get through this horrible time and find some peace again.

Bram.

I really wish there was a "Hug" button instead of a thanks one sometimes...I just want to give you a big cyber hug Kathy. Your doctor is a real piece of work. I had one similar to that and it took just about every ounce of control for my boyfriend not to deck him at one of my appointments. Fingers crossed you get away from that as quickly as possible. Yikes...I don't know how you've lasted this long with him. Is there any process for reporting his conduct and behavior? That just seems absolutely unacceptable to me.

Thank goodness for Baz...sounds like he is a real special guy. Sometimes the extended family is just harder. They don't see you day in and day out...that endless struggle with this monster. My family SAY they understand and I think they try...but they do a lot of thoughtless things sometimes or set really high expectations on what I can do not realizing it's day to day and sometimes I can do certain things and other times not.

And don't you worry about venting here...that's what we're here for. I tend to babble on ridiculously...long winded doesn't even BEGIN to describe me sometimes...but it's therapeutic in this environment. Even just typing things out and thinking "out loud" so to speak sometimes helps me get all my thoughts and priorities in order. Don't know what I would have done without this forum.

Take care and good luck. We're here for you.

You two are just amazing, I hope you know that? :grouphug: You have been such a great support, I genuinely think you're brilliant.

I've had a long day of appointments and arranging stuff, so I will try and keep this reply a bit shorter, for you as well as me lol. I had an appointment at my daughter's (posh) school this morning, she hasn't fit in very well since the move, and has been bullied quite a bit, one girl in particular telling the whole school Connie has AIDS and giving her a complex about her weight. Connie feels a lot better now as afterwards when she went back to class I got her some treats in the town to pamper herself and relax a bit more.

Anyway, I had the GP appointment this aft and nearly had a heart attack at the change in him. He's always been nice, don't get me wrong, but he's been too afraid to do anything without the pain clinic say so. Well, he had a good ***** to me about having had the same problem with the pain clinic (not sending letters, not answering calls, etc) and we were for once on the same page completely. I hope it lasts! He thinks my feet and arm symptoms are suggestive of spread, but that I'm also stressed and tired and run down so not to panic. To be safe he's referring me to the podiatrist for the feet as they're swelling and causing more problems. He asked me if the diazepam had worked for the spasms and re-prescribed without any problem. He was happy to refer me to the other pain clinic but suggested we try something else first, and this bit I wasn't expecting. He has referred me directly to the SCS surgeon. He said he has had the letter with my diagnosis from the neurosurgeon, and in it he had suggested I was put forward for SCS (which the pain clinic refused to refer me for even with that letter). My GP says it is unfair for the pain clinic not to allow me a consultation with the surgeon when it was suggested by my diagnosing doctor. Very happy indeed.

I suspect the surgeon will write back saying I have to go through the pain clinic, but at that point he may give some indication of whether it's highly UNlikely I would be considered, so might save me getting my hopes up along a long process that will come to nothing. He might give me a consult and tell me to go off and do a PMP with the pain clinic, but at least either way someone's listening. I still think it's better this way than waiting a year for the PMP (which is the only way this particular pain clinic allow you a consult with the surgeon) only to do it and find out I'm not suitable for SCS. Now I can at least think of the PMP as a bonus rather than an obstacle.

If the surgeon refuses the direct referral as he wants me to go through a pain clinic, I will get the referral to North Tyneside and ditch Mr Wilkinson at the RVI, who is pants. :D

They never did ring me back by the way. 4 different days, 8 different calls, one plea for help as I said I was really worried about some new serious symptoms, not ONE reply. :rolleyes:

Whoop!!! :D :wink:

I'm so pleased that your doc has at last found some humanity for you! And of course especially pleased that he agreed with me about the stress thing...:winky:

Must be horrible worrying about your daughter and her new school, any kind of bullying is awful, and you do live through the whole thing with them, with the added frustration of not being able to march in and grab the tormentors by their ears and give 'em a good talking to yourself. I'm sure she appreciates your support, and I bet she's gorgeous, bullies are always terribly unimaginative, it's usually about weight or looks, and they're usually the ones any girl is already worried about. Grrr.

I'm glad he's prepared to refer you for the SCS, but do read all round about them before deciding anything. I think many consider them a final step, as there are some significant risks....having said that of course, some folk absolutely swear by them. As with all these fun treatments we love trying :rolleyes:, only you can decide. I'd still be inclined to push for the news in clinic referral, as even if you do go down the SCS route, you'll need a good doc behind you.

I once rang my old pain doc three times in a week because I was scared about some new pain and symptoms I was having.....I only ever got the answerphone, never had a call back, and she totally dismissed it when I referred to it at the next appointment. That was the last time I saw HER! Some docs are just crap sadly.

So glad to hear you more positive :) You had me worried there!

Hopefully something good like this today is a corner turned, and life is maybe going to smile at you again. I'll keep my fingers crossed lol.

Bram. :grouphug:

Thanks Bram - I think I am just used to having so much 'other stuff' going on with the kids/family that I don't really see the wood for the trees and don't appreciate the stress levels. That and I don't feel as much of an emotional cripple as my body is telling me I am lol. Well, not all the time ;)

Connie is gorgeous, she is like many in our family, curvy, big boobs, pretty stunning if you ask me. I suppose at her age, you're either still a bit puppy fatty or like an ironing board, and she has curves. She also has the most amazing curly long hair and huge eyes and isn't chavvy, so I'm sure there's a bit of jealousy there but she doesn't see it that way. She's having awful trouble with her periods (started just as she turned 9, poor thing), so her hormones are all over the place and she is low/tired. She didn't tell me immediately about the bullying until they were all over her Facebook asking her if she wanted fries with her diabetes, and telling her she was going to die of "fatness", calling her frigid and telling everyone she has AIDS. Teenage girls can be really horrible.

Tomorrow is my middle son's first checkup with the psychologist at the hospital since just after his breakdown last year, and he's currently low too which worries me senseless, so when I think about it it's not surprising I have all these stressy things going on. Luckily my oldest is swanning through his college time without a care in the world - happy, well adjusted and totally LAZY. :rolleyes: Got girls flocking round him and yet rarely gets out of bed before lunch. It's alright for some!!

Totally agree about the pain clinic referral, will be going ahead but happy with today's result for today's outcome. Will be seeing him within the next week or so anyway so will go ahead then, he said he was going to prepare for it anyway by looking into whether I need funding etc, so he's not left it standing as such. I really can't see the SCS surgeon taking me on without a pain clinic referral anyway. But you never know - if he backs the pain clinic in saying it's not suitable for me, at least I'll know, and maybe before I wait another two years lol. I am not sure about SCS yet but I am sure that I want to know what's really open to me and don't want writing off as a lost cause.

I am sorry you had the same issue with your old pain clinic, what a pain it is when they don't take things seriously! You'd think out of all the services the NHS provides, a pain clinic/consultant secretary would understand the importance of promptly dealing with issues like this. :eek::grouphug: