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Chronic Pain
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Posted 2/8/2013 5:41 AM (GMT 0)
I know that many here have worse pain than I do, but I'm in a bad way lately and your thoughts would be so greatly appreciated that I can't begin to say.

I'm not sure, nor really are my doctors, exactly what is causing the pain in my hip and groin - I was diagnosed with gluteal medius tendinosis a couple of months ago, had a cortisone shot...and it did nothing but flare my CRPS.

Then on Monday afternoon I was super tired, had a lie down, and woke up in excruciating pain - maybe the worst acute pain I've ever had. Mum took me to the GP, who gave me a morphine injection. It took the edge off, not much more, but she did tell me to go back to the ortho (hip) early, as I'm not meant to see him for another couple of months, and suggested I get reviewed to check what is happening with the bulges in my low back.

I'm seeing another GP in the clinic this afternoon to ask about a CT referral and to try to get some ideas for pain relief to tide me over until I see my PM next week, when I can hopefully get my pump doses changed. I hope he can come up with some ideas. My BT meds aren't working and I'm vomiting most of them up anyway, my SCS isnt hitting the right areas (and to top it off, the darn thing is failing) can't wear patches as an ER med. Only thing that is helping a little is injections, which I can't have at home.

Tried - stretching, hot/cold packs, showers, gentle spa bath, every position under the sun (lying, sitting, even standing very short periods), music, meditation, massage - mum, and then had a professional massage this morning. Don't know what else to do, short of calling my PM for admission or going to the ER ... anything I've missed?

Laura
Posted 2/8/2013 5:53 AM (GMT 0)
Hey Laura....

I just want you to know you are in my thoughts and prayers....

Prior to getting my pain more stabilized, I had several hospital admissions to just get my pain under control. With all the health/pain issues you have - your body can handle so much.... so, I KNOW you hate the hospital.... but use it if you need to, my friend.

Beyond that.... the only thing I can think of (and I've mentioned before, so I'm sorry to pester you about it... I just can't remember if you've tried certain things....) is talking to your doc about trying fentanyl in your pump.... or via IV.... or orally (here in the US: Actiq, Fentora, Onsalis, and there's even a fentanyl nasal spray, I believe, now)...

I can't remember if you guys have Dilaudid (hydromorphine).... have you ever had that via IV? Did it help? Would your doctor consider using either that or fentanyl in your pump?

Does your pump have the thing where you can give yourself a bolus of meds?

Girl, other than that.... I can't think of anything.... but you have to do something to get a break, Laura.... if it's the hospital for a few days, like I said - I know you hate it - but at least you could try to break this pain cycle.

I'm so sorry you are going through this. Will keep you in my continued thoughts and prayers. Maybe others will have other suggestions that I'm blanking on right now.

Love, Tina
Posted 2/8/2013 6:45 AM (GMT 0)
Certainly wish I knew of something to tell you to do.

I will be spending you positive thoughts and many prayers.

Hoping you find some relief soon.

Vickie
Posted 2/8/2013 7:08 AM (GMT 0)
Hi laura, I wish there was something I could suggest, I'm still so new to this... The pain in your hips and groin, I have sometimes excruciating pain in that area, starts kind of at my waist line in the back almost mid butt on each side, then wraps around in almost a band of pain forward and goes down to the front areas... it gets violently brutal at times. I was told this is from the disc bulge that I still have at the T12-L1 level, that one apparently is hitting the nerve pretty good in the last set of scans that they did, it's primarily on the left side. Although I also have something new there, I'm not sure what it is, haven't talked to the doc about it, it's a bright red patch, goes straight across the painfull area on the left side, been meaning to ask someone about that, it's getting hard to wear pants because of it, it's almost as painful as my back or my feet.

Anyways, if your hurting the way I described, I would recommend you go ahead and do what you have to to get a new MRI or Ct of your back.

I really hope you're able to find some relief soon, I am very new to the CRPS thing, that hip pain I described, I've had that for a while, it's so aweful because it hit's the nerves for both my bladder and my genitals, needless to say, going to the bathroom has been a dreaded experience for a while, I hope that's not what you're experiencing. I'll be praying for you, and I hope that this is resolved for you soon. Please take care of yourself. And, as Tina said, if you need to go to the ER, please go, I just can't stand the idea of people suffering.
Posted 2/10/2013 6:01 AM (GMT 0)
Tina, Vicki, Matt. Thank you so much for your love and support. Matt. Being away a while, I'd no idea you'd been diagnosed with this beast thing as well - needless to say, if you've any questions you can't answer from everything on the forums, or you ever want to talk about it, you need only ask - just write something here or send me an email with HW in the subject line. That goes for anyone else too - I might not frequent the board as often at the moment, but I'm usually available if needed.

So to me... The GP I saw Friday evening felt that given my history with compression fractures, there was a chance I'd done the same in my lumbar spine despite the history not fitting, and that the best starting point was x-ray. I had that done yesterday morning and it was all clear - not sure if that's a good thing or bad. Last night the pain was worse - mum took me to a late night clinic with close to 10/10 pain - was vomiting, close to blacking out. Also doesn't help that my SCS has now all but failed (end of battery life) and needs replacing.

Dr who saw me there was nice, could see my pain but the strongest med they carry overnight is tramadol which he felt was pretty pointless even to try, and said even if they carried strong meds, with my history he would prefer me in hospital. He wrote a referral letter - but I have long history through our nearest ER anyway. They were good - IV morphine in ER, admitted to a proper ward within 3-4 hours where I had more morphine.

Drs who reviewed this morning stopped that - basically because they want me taking meds they can discharge me on at some point - but they doubled both my OxyContin and Oxynorm without thinking about it - so I've now gone to 100mg of OxyContin a day and oxynorm every 2 hours if I need it. Even that is only keeping pain down for a wee while- my back and right leg are better than they were, but my left is STILL a good 8 or so. Drs are going to review again in the morning and we'll see what happens

Laura
Posted 2/10/2013 6:18 AM (GMT 0)
Laura....

I am thinking of you tonight! You always have my continued love and support :) I hope you know that.

I know you hate the hospital... but you were at the point where you had to do something.... to get some IV pain relief and just to give your body a chance to possibly break the pain cycle, or at least just have a break.

Again, just my two cents for what they are worth, lol.... but I can identify w/ some of your comments re: your meds.... and I just had a few thoughts. For me - I'm on 90mg of oxycontin a day (along with two different BT meds).... which, in itself, only knocks me down a notch or two. I literally could triple my dose - and I would not getting anymore pain relief. In the past - different pain management docs had my on VERY high doses of morphine, or oxycontin, one time - a mixture of morphine and oxycontin, etc - and it didn't work ANY better than the lower doses.

Point being.... it sounds like they are doubling your meds, too.... and, to me, if the meds were accepted properly by your body - they *should* bring down your pain levels more. Could you just need to change meds?

I just hate to hear your suffering so much. Can you talk to the doc in the morning about at least trying something different for your fast-acting med.... To me, you need the strongest pain meds available. Can they change the morphine in your pump?? Can you try to get the oral fentanyl??

I'm sorry, Laura, to go on :) I'm just brainstorming - because I absolutely hate to hear of your pain levels. Maybe you could talk to the doc about some of the things I mentioned.

I really, really think the oral fentanyl might help your pain. Or the hydromorphone or fentanyl in your pump.

Sending you lots of hugs and love from California, my friend. I'll look for your update tomorrow! Praying for you right now. --Tina
Posted 2/10/2013 7:46 AM (GMT 0)
Laura,so many times the we find the ER treating us like addicts or shrimps and if they only could know how much we force ourselves to endure before we even go to them right? I'm so glad that they're at least trying to help you find some relief that works outside the hospital so you can take it with you. Seems here most of the time we get a shot and pushed out the door.

I will be thinking of you and sending positive thoughts your way.

Try to check in when you can.

Vickie
Posted 2/10/2013 8:48 AM (GMT 0)
Hey Tina, part of the problem is that my stomach is just so very slow with the gastroparesis that I'm sure it greatly affects my med absorption rate - this is probably into TMI territory, but I sometimes have food sit in my stomach for 2-3 days before it goes anywhere - unfortunately I can tell this cos occasionally I'll eat something new/different that doesn't agree and it will come up a couple of days later looking almost edible.

Other BT meds - I don't know what there is really. The oral fentanyl isn't available here, hydromorphone doesn't touch me and I'm limited in how much morphine I can have because I get sick and super itchy.

They can't so anything with my pump here. They really are just general medics, not PM doctors in any way - they don't even want to play with things like my topamax dose because they aren't over familiar with it, beyond knowledge of its use.

Just wish I could find out what's going on :(
Posted 2/10/2013 9:35 AM (GMT 0)
Uggghhh, so dang frustrating, Laura. I SO wish they could find out what's going on.....

Please update when you can, especially after you see the doctor.

Love and Hugs... --Tina
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