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CRPSpatient

HealingWell Forum
>
Member Profile
Display Name
CRPSpatient
Profile Created
3/5/2011 4:08 AM
Last Seen
1/8/2021 6:26 AM
Total Posts
1278

Last 50 Posts

J tube pain - and long time, no see

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...

12/25/2020 11:27 AM

Chronic Pain
J tube pain - and long time, no see

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...

12/21/2020 10:10 AM

Chronic Pain
Can't fly on plane's, can I convince airline to let me stand?

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...

8/2/2016 10:40 PM

Chronic Pain
FMRI to detect pain?

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...

4/24/2016 3:52 AM

Chronic Pain
SCS…finding the right one & imaging post implant

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...

3/22/2016 7:36 PM

Chronic Pain
Overcoming My Wifes Unknown Condition - Journaling the Journey

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...

2/14/2016 2:55 AM

Chronic Pain
more fatigued. more pain.

Hang in there & hope your appt comes round quick. Hope you're managing to stay cool in the worst of this heat....

1/20/2016 4:05 AM

Chronic Pain
CRPS

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...

1/20/2016 4:03 AM

Chronic Pain
Hello - I'm Patty and here's my introduction :)

Welcome Patty Laura...

9/21/2015 7:05 PM

Chronic Pain
Cervical traction and manipulation for neck and head pain.

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...

9/21/2015 7:05 PM

Chronic Pain
Cervical traction and manipulation for neck and head pain.

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)...

9/19/2015 7:44 PM

Chronic Pain
chronic pain and the future

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...

9/19/2015 7:23 AM

Chronic Pain
Cervical traction and manipulation for neck and head pain.

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...

9/18/2015 11:06 PM

Chronic Pain
Cervical traction and manipulation for neck and head pain.

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...

9/18/2015 9:30 PM

Chronic Pain
Suffering from Blepharitis

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...

9/18/2015 9:15 PM

Chronic Pain
Topiramate

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...

9/6/2015 4:26 PM

Chronic Pain
It's been a long time... have some questions about SCS

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...

8/27/2015 1:35 PM

Chronic Pain
It's been a long time... have some questions about SCS

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...

8/27/2015 4:20 AM

Chronic Pain
Anyone with nervous system dysfunction (migraines, POTS), had Sympathetic Block willing to talk?

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...

8/23/2015 8:01 PM

Chronic Pain
Location of Pain Pump

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...

7/19/2015 2:24 AM

Chronic Pain
neuropathic pain syndrome & fibro combo

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...

6/13/2015 5:01 AM

Chronic Pain
Trochateric bursitis-a different question

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...

6/13/2015 4:56 AM

Chronic Pain
Chronic nausea…please help!

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 -...

6/10/2015 3:41 AM

Chronic Pain
Trochanteric bursitis after TKR

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...

6/9/2015 1:10 AM

Chronic Pain
Mindfulness :)

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...

6/8/2015 7:21 AM

Chronic Pain
Chronic nausea…please help!

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...

6/8/2015 7:17 AM

Chronic Pain
Monday check-in

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...

6/2/2015 4:45 AM

Chronic Pain
Book recommendations?

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...

6/2/2015 4:34 AM

Chronic Pain
Neuropathic pain:- Clothing choices

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...

6/2/2015 4:32 AM

Chronic Pain
Boston scientific scs

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...

5/14/2015 9:36 PM

Chronic Pain
Baclofen pump that does not reduce pain

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...

5/14/2015 9:21 PM

Chronic Pain
Newbe with Somatoform Disorder

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...

5/5/2015 9:36 PM

Chronic Pain
Dad other lung just clasped

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...

4/29/2015 8:51 PM

Chronic Pain
The Pain Pump-pros and cons,need advice

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...

4/29/2015 5:56 PM

Chronic Pain
The Pain Pump-pros and cons,need advice

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...

4/29/2015 4:24 AM

Chronic Pain
i quit.

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...

4/15/2015 8:11 AM

Chronic Pain
Newbie here

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 -...

4/15/2015 8:00 AM

Chronic Pain
Introduction from new member

Hi Scott and welcome. You've definitely been through the ringer. Hope you find plenty of support here. Laura...

4/14/2015 4:44 AM

Chronic Pain
Monday check-In

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...

4/14/2015 4:41 AM

Chronic Pain
NeuroStimulator Post Op Pain - RSD/CRPS

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...

4/14/2015 4:22 AM

Chronic Pain
Magnesium Supplements for Chronic Pain?

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....

4/10/2015 3:23 PM

Chronic Pain
I'M IN HELL! Body Rejecting Meds!

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...

4/10/2015 7:56 AM

Chronic Pain
Needing Prayers Please!

Sending lots of positive thoughts your way Pam x...

4/5/2015 10:21 PM

Chronic Pain
Prolia infusions

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...

4/5/2015 10:17 PM

Chronic Pain
Prolia infusions

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...

4/5/2015 3:24 PM

Chronic Pain
Introduction -- New Member

Hi Claire and welcome. You've definitely come to the right place :)...

4/5/2015 9:57 AM

Chronic Pain
CRPS

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...

4/5/2015 9:55 AM

Chronic Pain
Trial with St Jude spinal stimulator

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...

4/3/2015 2:28 AM

Chronic Pain
Neurostimulation--- To do or Not to do??? That is the question !!!!!!

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,...

3/28/2015 11:12 PM

Chronic Pain
Neurostimulation--- To do or Not to do??? That is the question !!!!!!

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...

3/28/2015 2:52 AM

Chronic Pain
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