#129641 - 11/25/08 02:10 PM
Extreme Pain
|
Stuart...
Registered Visitor
Registered: 03/24/07
Posts: 33
Loc: London
|
I am currently having a lot of extereme pain.
In the uk we don't have hydrocodone (vicodin) and the nearest we have is oxycodone.
Below that we have dihydrocodeine (which is only slightly stonger than standard codeine). We have all the NSAIDS and paracetamol (called acetamophen or these abouts in the US).
I find that dihydrocodeine takes the edge off when things are averagely bad. Oxycodone takes the edge off when things are averagely bad (I find the effects of oxycodone only slightly better than the dihydrocodeine when it comes to pain relief( although I take a hell of a lot of dihydrocodeine). The oxy has a lot more side effects though so its not really worth taking the Oxynover the DHC).
There's fentanyl patches and Morphine Sufflate, which again just dulls the pain a bit on an average day.
Sorry to be a bit negative but i'm at the end of my teather.
Is there ANYTHING that will take away my pain, on a bad day?? Or even an average day??
Our GPs seem to deny that there is any analgesia stronger than Oxy (which is a lie).
The only thing I have found that works on a really bad day is drinking a litre bottle of vodka, straight, as quickly as possible without gagging and passing out ASAP thereafter.
The other thingIi have found that works OK is buying drugs off the internet (Valum, Xanax). About 150/200mg of Valium will knock me out for a few hours, which resolves the issue.
My question is, what I want, and I'm fine with the dyhydrocodeine on an average day and put up with the pain. But is there any way to get rid of the actual pain on a bad day?
What I really want is several vials of morphine or diamorphine for IV use as and when when required. But I dont fancy buying the stuff off the street. Don't know what i'd be duying of how to prepare it.
So, does anyone have any advice? Any access to anything that works or if not, any reason at all why at 26 and in too much pain to work (or often move) and being fairly depressed (been worse), why the help shouldn't I do myself in?
Anyway. Can't be bothered to write any more. I'm sorry, this post has been rubbish and comes across as a bit rude at times but I am sorry but very serious.
Any help, comments, advice, anything.... would be much apprieciated.
Cheers
Edited by Stuart... (11/25/08 02:24 PM)
|
|
Top
|
|
|
|
|
#129644 - 11/25/08 02:47 PM
Re: Extreme Pain
[Re: Stuart...]
|
sequoia
Registered Visitor
Registered: 11/26/07
Posts: 1389
Loc: california
|
stuart just can't imagine your pain level. i feel like an idiot complaining at all. just know you can and should write any time. we will listen. i do a thing called watsu, it is a special form of floating in hot - 91 degree, water and it reallllllly helps for about an hour while i am in it. but even better, the effect lasts many more hours after. i think it is something like the endorphins runners get or people who are able to work out really hard get in their brain. as far as the meds. wow, if the fentanyl doesn't work, i know where i used to volunteer where we used to live, they had fentanly patches on folks in their terminal days of cancer. God if that doesn't help your pain, i cannot imagine.
just know i pray for you. peace, sequoia
|
|
Top
|
|
|
|
|
#129646 - 11/25/08 03:21 PM
Re: Extreme Pain
[Re: sequoia]
|
Bingo
Registered Visitor
Registered: 05/26/08
Posts: 348
Loc: CT
|
I'm so sorry to read that you are in such horrible pain. Do you have pain specialists there? My Dr., and Rheumatologist do not prescribe pain medication, but I began going to a spine and pain clinic when things got so bad that I couldn't function normally. They were wonderful in terms of listening, assessing, assisting with pain management and therapy. I hope that you have something similar where you are.
I'll put you in my prayers tonight.
|
|
Top
|
|
|
|
|
#129664 - 11/26/08 02:41 AM
Re: Extreme Pain
[Re: Bingo]
|
Xandra
Registered Visitor
Registered: 11/12/08
Posts: 39
Loc: Seattle
|
Has anyone suggested a TENS unit for you? It uses electrical stimulation to decrease pain. It doesn't take away my pain entirely, but at the very least it's a distraction. At the best, my pain goes away for a while. And once you have one, you can use it forever!
|
|
Top
|
|
|
|
|
#129675 - 11/26/08 06:44 AM
Re: Extreme Pain
[Re: Xandra]
|
jackieb
Registered Visitor
Registered: 04/16/07
Posts: 1497
Loc: Saltville
|
As a joke my best friend told my to drink a fifth. I may still have pain but not remember it. I told him I would proably set myself up for more pain down the road.
I am so sorry you can not find anything to control your pain We all have days when we wonder if it will ever cease. The TENS unit is a blessing. Do ask about that.
_________________________
Jackie
|
|
Top
|
|
|
|
|
#129684 - 11/26/08 08:17 AM
Re: Extreme Pain
[Re: Stuart...]
|
Tacitus
Registered Visitor
Registered: 06/06/03
Posts: 2046
Loc: Palm Springs area, California
|
Sorry, Stuart:
I've had some REALLY BAD days with AS and when I was 26 I only WISHED I could have had 5% of the information available to me as you do now. Even if I had been in London, it would have been better for me, as I would have likely ended up in the AS Middlesex Clinic, regrettably now gone but the information is still there and just as valid today as ever.
Your drug-centered approach to the pain is alarming; AS cannot be treated by what we put into our bodies, but only by leaving stuff out.
Since you are 26 years old, I can understand somewhat, but I don't know how long you have had AS--that would help to determine whether your pain is from inflammation or from damage.
If from inflammation, I strongly suggest that you work to eliminate this because it will certainly lead to damage that cannot be reversed--and drugs to mask this pain will only make matters worse, long-term.
Good luck, whatever decisions You make,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAAProfessor Alan Ebringer on Diet and ASHodie mihi cras tibi. DO IT (diet) or be done to.
|
|
Top
|
|
|
|
|
#129694 - 11/26/08 10:49 AM
Re: Extreme Pain
[Re: Tacitus]
|
schmatcat
Registered Visitor
Registered: 02/19/08
Posts: 37
Loc: Florida
|
Hello Stuart-
I hate that you are suffering so.
Sorry this is so long (!) but I really feel for you-just check out the link for quicker help and read rest later or never 
I found a 36 pg PDF booklet
http://pain-topics.org/pdf/IntractablePainSurvival.pdf
on one of the Professional Pain Management Association websites last year when searching for help, resources, understanding, etc. The MD who wrote it specifically deals with intractable pain sufferers, and details alot of issues surrounding pain management that I hadn't thought of before.
Please read it through, and be safe with any form of self-medication. I empathize all too well with your need for relief , when you're suffering and alone it's horrible for each endless second.
Specifically targeting quick relief with the meds you have, the discussion of "potentiators" on pg 20 may help you. I think you already experienced potentiated pain relief per your description of valium use.
Just do be careful, conservative, as use of 1+ CNS depressants can easily kill you.
As unrelieved pain often makes me nauseated, I also discovered potentiated pain relief by accident-when taking 1/8 of Dr prescribed 25mg Phenergan tabletI also found the directions for crushing a NON TIME RELEASE narcotic into creme for topical application helpful.
I have done alot of research into pain management so once you (hoepfully) get past this crisis period, please let me know if I can share any resources, or provide links to information that may be of interest.
Four notes: 1) extreme pain means your disease process is active so if possible medically, financially, etc and if not already done, please try for more aggressive treatment; and 2) muscle relaxants can help reduce certain types of pain not touched by narcotic meds-Tizanidine (flexeril + xanax) and Skelaxin have helped me in ways no pain reliever ever did. Nerve deadening meds can help w/nerve pain-Gabapentin (neurontin), Lyrica; and 3) please don't feel attacked/misunderstood/lectured, just my own experience here...even some of my worst pain seems to be eased, sometimes, by exercise & stretching something I try to do every day, music, comedy, yoga, petting animal companion, good book, etc, 4) Brain is mediating/translating your pain so fooling it in various ways can help, e.g. I'm not depressed but good research shows anti-depressants work on the same pathways that transmit pain messages so it's worth a try...
Also, doctors may actually take you seriously and listen when you can detail various alternatives to narcotics you've tried.
Warmly, Susan
_________________________
Susan/Schmatcat
RA & PsA w/probable AS
|
|
Top
|
|
|
|
|
#129712 - 11/26/08 11:38 AM
Re: Extreme Pain
[Re: Stuart...]
|
ken
Registered Visitor
Registered: 01/16/07
Posts: 124
Loc: Connecticut
|
You will get lots of replies to your post. I just want to address one area: drinking as a form of pain killer..
It does not work! Its the absolute worst thing you can do. I used to do the same thing, I would drink till I felt nothing, but then the next day I would wake up with more pain and a hangover. A hangover and AS pain is a deadly combination. Quit the heavy binge drinking, its making you worse.
Ken Mc
|
|
Top
|
|
|
|
|
#129720 - 11/26/08 01:35 PM
Re: Extreme Pain
[Re: ken]
|
Charlie
Registered Visitor
Registered: 07/28/04
Posts: 2629
Loc: UK
|
Stu, I am in London.
Get a referral to a Pain Clinic. They will help. Are you on the strongest Fentanyl patch? Just a rheumatologist will not help. They are generally not good at a addressing pain, your GP should be happy to refer you to a Pain Clinic AS WELL.
What is being done for your AS in terms of treatment? Prednisolone is not a great long term solution, but has really helped me out. What about methotrexate, sulfa, or the biologics? I know the latter are very hard to come by in the UK.
Can you get Voltarol suppositories? Very strong and work well for me from time to time (cannot take constantly, due to stomach issues).
I'll second what Ken says about booze. Spondy + hangover is pretty lousy. If you are intent on solutions other than medical, cannabis is probably your best bet, though I'll probably get a fair amount of crticism for saying so!
Good luck.
_________________________
 ***************************** Age: 36 | Gender: Femme! | Interests: Song-writing, gardening. Click here to listen to Charlie's Songs (broadband only).
|
|
Top
|
|
|
|
|
#129722 - 11/26/08 01:43 PM
Re: Extreme Pain
[Re: Charlie]
|
Charlie
Registered Visitor
Registered: 07/28/04
Posts: 2629
Loc: UK
|
Oh, and although it sounds a bit feeble, don't forget that a hot water bottle can feel good. Or a 'leccy blanket in this weather. Ibuprofen gel that you rub on can buy you sime brief episodes of sanity!
Generally for worst pain, combine Voltarol (i.e. an NSAID) with your oxy (i.e an opioid). You can take them together safely.
You may find it is a combination of lots of little things rather than the one big med which helps.
_________________________
***************************** Age: 36 | Gender: Femme! | Interests: Song-writing, gardening. Click here to listen to Charlie's Songs (broadband only).
|
|
Top
|
|
|
|
Moderator: ElinAslanyan, Chris Miller
|
|
