I have had PHN for five months and am barely coping. What else can I do?
Posted , 18 users are following.
I have had PHN for five months. I have stopped hoping that the pain will somehow go off and I am trying to face up to the prospect that is may be years before it does, and that I may have it for the rest of my life. I dread the start of every day when I wake feeling comfortable in bed but after a few minutes the agonising pain starts up and I don't know whether to try to get up and about which is like having a demon with a pitchfork stabbing me and making it impossible to think. If I get a phone call that I have to answer I can't be sure I am answering sensibly. I take Naproxen with Omeprazole and Lyrica (pregabalen) three times a day, and Versatis (Ludocaine) patches applied either in the evening and taken off late morning, or in the morning and taken off at night. The only things that really work, I am sure, are the Naproxen and the Ludocaine, but the best I can get from all these is a period of calm in the afternoon and early evening, and then I feel exhausted and sleepy, so the amount of the day when I am functioning properly is just two or three hours. I work from home so I must somehow do better than this. I have been prescribed first an anti-depressant (amytriptiline) which simply knocked me out so that I slept in a drugged haze, and an anti-convulsant (Mirtazapine) which was similar in effect. My GP says that he wouldn't want to try opiates (I agree!) and that maybe I should go to a pain clinic. I thought this might involve having nerve-numbing injections, but apparently it is likely to be just talking about how to live with the pain.Another problem is that eating comforting warm and sweet food seems to bring a bit of relief. My weight has gone up by 20 lbs in three months and I find that hard to control.
I feel I ought to be able to cope somehow by structuring my day but I can't make that work. If anyone had similiar problems and has found better ways to cope than I have, please tell me!! Whatever I do leaves me too little time between agonisingpain and exhaustion and sleepiness
0 likes, 61 replies
steve_1 donald29
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I was advised to take an opioid and an antidepressant to comtrol the pain by my GP and thank god I listened..
I can take 10mg Amitrityline (good for nerve pain) and 1 or 2, 50mg caps of Tramadol, up to 400mg per day. what I actualy take is the Amitriptyline at night and one or two (usually 2) Tramadol over the course of the evening.
steve_1 donald29
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Anyway, as I was saying. I started with taking one or two at the onset of pain but gradually whittled it down till I found a level I could cope with. I've been on this regime for a few years now and every so often I stop taking them to prove that I can. It's only the pain that makes me return to them.
These things are only addictive if they are misused.
You may find Naproxen or some other form of ibuprofen will work for you, but for me they were next to useless.
Good luck with that.
croft4Penny donald29
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jim66082 donald29
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Sorry to hear about your pain for PHN. You are not alone. THe good news is that everyone is different and you are still at the early stages at 5 months and the pain may diminish or disappear. I tried all the "brain drugs" that have side effects which include pain reduction (i also had amiltriptyline oral and topical - didn't help but lots of side effects for the oral including drowsiness). Yes you should go to a pain clinic given there a range of treatments they can try and everyone is different. On this site you will find people that understand how difficult it is to deal/cope with this pain. Most people dont understand given one "looks ok" except when one shows the characteristic facial signs of pain and also has the psychological impacts of trying to cope with prolonged pain. for me there are only two things that help - the narcotics for the deep pain (does not do a lot for the surface pain) and creams/lubricants on the skin along with a soft somewhat snug but not tight and NEVER LOOSE cotton undershirt. Once the surface pain starts from either friction or on its own there is nothing that stops it outside of taking off the clothing and lying down and keeping the pain area free from anything touching the area. Haven't found anything else. Oh yes for some reason jacuzzi jets of water help (however a shower is painful - so has to be the right pressure/pulse of water). take care and feel free to ask anything on this site.
donald29 jim66082
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donald29
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And Thanks Jim for what you say about a pain clinic. I'd rather written off the idea, just through not knowing enough about what they do. It's so good to hear from people who write from their own experience. Seeing a GP consulting his/her book of available medications and clearly relying on that rather than real-life info is not reassuring! Thank you everyone for helping.
anna38464 donald29
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donald29 anna38464
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noddy_9 anna38464
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noddy_9 donald29
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donald29 noddy_9
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I understand very well how you feel about the doctor never giving you the anti viral drug. I first saw a GP when I had severe pain and what I now know was an over-the-whole-body burning sensation that passed and left pain in one place which is a definite signal that shingles is about to erupt. Unfortunately the GP only 'examined' me with a vest on and said it was 'muscular' and that physio would help. I saw a physio next day and she instantly said I had shingles and I should get the anti viral drug immediatel. I did, but it was too late - it has to be given immediately. That useless GP was 'disciplined' I heard later, but that is no consolation.
Dealing with GPs who vary a lot in their competence and compassion and ability to listen is a skill that can be developed I believe, I suggest: be sure to play the part of the patient who has done his own research, but is very keen to know what the doctor says. Try treating him as an equal and get him/her to discuss alternatives. Act being brave about it all and limit the complaining! A world-weary GP faced with what he sees as yet another wearisome whinger will just get you out of the surgery as soon as he can with a quick prescription. I'm not saying you aren't the ideal patient! I'm just saying how I try to get the best out of a GP, and I only wish I could do it better.
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anna38464 noddy_9
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A week later I got a call fro m the doctor who did the culture and said she FORGOT to call me and I had a staph infection. Well, it was too late , I already was given the vaccine and I got super sick with shingles again(the worst I had ). Besides the rash , now on my arm, I had many other serious symptoms. I needed VNA services at home for a long time. I am just mentioning it because it may be worthwhile to research if you should get the live vaccine when your system is already compromised. I think there are different schools of thought on getting the vaccine if you have PHN . My experience was super bad.
Also I initially got the shingles in an area in my body where I had been injured . Anotherwords the shingles went to the weak area of my body where the injury was and followed the nerve path of that injury. Has that happened to anybody else?
jim66082 anna38464
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I am really sorry to hear about your siutation. I know how I suffer and cannot imagine how you cope. We on this forum are probably the few that truly understand. I know that doesn't provide relief but your not alone. I really dont know what else to say given i know what your days are like. jim
noddy_9 anna38464
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noddy_9 donald29
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jim66082 noddy_9
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anna38464 noddy_9
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jim66082 anna38464
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noddy_9 anna38464
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noddy_9
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donald29 noddy_9
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I don't think I'll try make-up, even just a little, because my daughters would have fits. I find presenting yourself as in dire agony but being brave about it gets the best results from a GP. Being in dire agony is the simplest part of that act, but being brave seems to get them on your side enough to rummage through their pharmaceutical book to find something else to try. You never knoiw, it may help.
Thanks for recommending the Shingles Society. And thanks to help from all the good and helpful people here, I shall be going to a pain clinic as soon as I can get the GP to make me an appointment,