Hi Susie, Yes, it would be a few years. So frustrating as, although my pain has been still well and truly present, between a new physio, new pain specialist (same group I’ve dealt with since about...
Hi all - I’ve no idea how long it is since I’ve visited these parts, though I recognise a fair few names. I’m wondering if anyone has been through tube surgery (or PEG, or anything similar) and...
You may be able to make a case with an airline for being able to travel lying down - as Vickie said, planes can accomodate stretchers (and in some cases, reclining wheelchairs and such) - but I...
Hi kadakada, I've never come across it being used in a clinical contex - and thanks to my computer dying I'm posting from tablet (which I find it much harder to search from) - but I know one of the...
Sunny - it is correct that you cannot shower during the trial - it is sink/sponge bath only as your trial leads are connected to an external stim unit. They'll often give you a bag/carry case thing...
Welcome Nathan & Sasha. I don't post much these days, but you being an Aussie caught my eye. I'm not sure we have teaching hosptials in the manner that the U.S. does - but depending on where you are...
Hang in there & hope your appt comes round quick. Hope you're managing to stay cool in the worst of this heat....
Hey Rob, I don't check in here much these days but happened in just now and noticed your post. I've got "full body" CRPS - though worse in my legs & feet than anywhere else. Splints are kind of...
Welcome Patty Laura...
Pitmom, using tennis balls in my house is easier said than done! I use them (or try to, lol) quite often for my glute and piriformis issues - but my labrador thinks they exist purely for her...
Thanks cogito...don't think it's sinus - dr did ask about that - but although some pain is around my eye, it's a different (had chronic sinusitis as a kid - so know what it feels like when I get it)...
Hi Nicole, also welcoming you. The others who've popped in so far have given some great advice. have you got a counsellor or someone you can talk to in a less formal sense? Are there other areas of...
Thanks weasel. Glad to know it's helped you at least short term. The pt I have in mind is someone that my own has specifically recommended & deals mainly with neck/spinal issues, so I've no worries...
Hi folks, Has been a wee while since I've been around properly. I know a fair few of you deal with different neck and head pain issues and hoping I might be able to pick some brains. I have a history...
Hi Char. I have intermittant problems with blepharitis - now far less frequent than it was thanks to the nightly routine my ophthalmologist got me onto. Before that I'd end up with one or both...
Leila, that's great about your Dad being home. Both those side effects, particularly the tingling hands, are very common with Topiramate. But do keep a watch (pardon the pun) on the vision...
Diagnostic & assessment protocols are fairly universal, even though our treatment protocols vary...that comment is based on papers I've read, a few US & UK based doctors and probably a hundred or...
Matt, mine has been a load of trouble in terms of "maintenance" - lost count now of the number of lead migrations and revisions I've needed, had early battery failure at one stage and needed a...
Hi ok... I don't check in here that often these days, but happened to notice your post as I've got pretty major autonomic dysfunction, though POTS is not one of my issues - my HR can swing either way...
Hi Catwoman... I'd definitely go for abdo. I have both pump and spinal cord stimulator - my SCS I was given the option of abdo or the top of my hip/buttock area - surgeon wanted buttock, I pushed for...
I've never heard of neuropathic pain syndrome being used as a specific diagnosis - only as an umbrella term covering various other things from CRPS to PHN to diabetic neuropathy to whatever...pretty...
1 day...probably a stupid question, and probably something your PT would have asked you anyway - but could you have knocked your hip? You've probably mentioned them elsewhere - but what are your...
Hi Sunny... Zofran (ondansetron) that roccky mentioned is my main med...when I get really bad I back it up with sublingual lorazepam. The loraz isn't an antinausea med in and of itself of course -...
Hi Annoda and welcome. I've had ongoing problems with trochanteric bursitis & glute medius tendinopathy for a few years now in conjunction with other problems. Cortisone injections didn't help me a...
Mindfulness has made a big difference to me...I was put on to it several years back by my PM (who is an advocate of both mindfulness and ACT) after I had a few run ins with a variety of psychs who...
Hugs Sunny. Mine is better controlled than it once was, but constant nausea is something I live with, so I empathise. With you having a neurogenic bowel...although you've only described vomiting bile...
Thoughts especially to your Dad Chart, to Sunny & pitmom for your daughter with her appointment. Usual up & down here for me...had a bit of a dummy spit the other night with pain, fatigue and...
Explain Pain has always been one of my favourites - it's by Lorimer Moseley and David Butler, a couple of Aussie pain researchers. They do have a new one out too, aimed more at pain patients than...
This is an issue for me also... I find I can wear only soft fabrics like jersey and tracksuit type, or very soft linens. With my legs in particular though (for me the problem with sensitivity is body...
Hi Tomm. I would agree with the others about getting another opinion, especially if your goal is to get back to work. I've had a spinal cord stim for 9 years - and while it has been a lifesaver for...
Hi Connecticut. I have had a baclofen pump for 7 years for severe dystonia/spasticity mainly affecting my legs and feet (mine is secondary to a condition called CRPS. There is some evidence that...
Welcome Old Soldier. Is somatoform disorder the same - or at least similar to - conversion disorder? Just wondering as a girl I was at school with suffers from CD & recently spoke out on a TV...
So sorry to hear about your Dad Leila. It's horrid knowing parents are going through a bad time and you can't go to be with them. My thoughts to both of you - and all the best for your appointment...
Susie...I'm actually a bit taller than you - I'm about 5'3 - but am always sitting because of my legs/feet & since I broke my back I kind of 'flop' which creates extra problems too. Not sure what I...
Hi Bakerman and welcome. I also have a pump - though mine is more aimed at controlling my dystonia, so my main pump med is Baclofen, with a moderate dose of morphine. I'd mostly agree with what Susie...
Sunny, just try to remember that you've been through an awful lot very quickly. Big surgeries take a huge toll on mind and body, especially when you've had so much go before - and it's very, very...
Hi Broken, and welcome. I don't post here as often as I used to, but you've definitely found a kind and caring place to make yourself at home. Depression and chronic pain go hand in hand for sure -...
Hi Scott and welcome. You've definitely been through the ringer. Hope you find plenty of support here. Laura...
Good luck to all of you with appointments this week. Jamie, someone has definitely turned the heating off down here hey? Think it was only 4°C here one morning late last week and still two months til...
Hi Tex and welcome. I had my first SCS implanted for my CRPS about 9 years ago. Had a super quick recovery from surgery first time round - felt fine after a few days - but was quite a different story...
Hi web... I think a lot of the evidence out there with magnesium and pain is anectodal/based on case review rather than backed by good scientific study - but for all that I do find that it helps me....
Aw Dixie, sorry you're going through such a rotten time :( not sure I've got much to add to the great advice you've already been given, but just wanted to offer a virtual hug and my thoughts. And...
Sending lots of positive thoughts your way Pam x...
I'm glad your doctor backed you. I ended up making the decision not to go back to my endo (who was prescribing it) as it was a group through the public hospital dept - and though the main professor...
Hi Scorpio girl... So sorry you've had to experience that (assuming you're talking about ONJ?) Prolia/denosumab is supposed to be safer than older osteoporosis meds (the bisphosphonates) in that...
Hi Claire and welcome. You've definitely come to the right place :)...
Hi rsvp and welcome to the cp forum. I've had CRPS since a knee injury/ surgery when I was 14 ...now 30 with full body spread and a few other bonus features besides. I am managing a bit better now...
Hi Kim & welcome to HW. I've had a St Jude stim in some form or other (on my 3rd IPG - currently have the Eon Mini) for almost 9 years, though mine is implanted for CRPS pain mainly in my legs. In...
I'm missing it somewhere Susie...but reading what others have written here in the past I don't doubt what you're saying in the least! Though it always astound me that we're in such similar countries,...
It's definitely something to take your time over. When they work well they are wonderful - when they don't, they can be a nightmare. SCS is nothing at all like a TENS... the latter causes me...