Postherpetic Neuralgia :: PHN And Low Energy
Mar 28, 2016
I've been suffering from PHN for about 2 and half years. The pain is mostly around my eye, temple and forehead, sometimes the top of my head. Lately I've been finding that I get very drowsy after an "attack" of pain. Does anyone else ever get that? I can't work out if it's an effect of the pain or a side-effect of the medication I'm on (which is a mix of Cymbalta and Pregabalin).
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My 91 year old father contracted Shingles in November 2014 and from being totally independent - living alone and driving a car he had to move into care as has suffered postherpetic neuralgia since. He has shooting pains going down the sciatic nerve in his right leg. It seems like he has been on every drug known to man and although some of his pain has been alleviated he still has excruciating episodes. His only means of relief is to stand so can spend hours sitting/standing/sitting/standing. He has, however, since the shingles suffered edema in his right leg also. Amazingly he still tries to maintain some independence and tries to walk, however, this is so difficult now that his leg is so heavy and swollen. I don't seem to be getting any answers as to why he has this Edema. He never had it before the shingles and although he had it mildly afterwards it is now extremely bad. I'm wondering whether it could be the medications that he's on and would be interested if anyone else as experienced this and what the cause was.
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From reading many other threads, it seems to me that one frustrating thing about this condition is that there's no one-size-fits-all description or solution. Is there anything outside of heavy prescriptions that soothes your pain, and are there any triggers that make it worse?
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Here are things that usually provide some relief:
1.Epsom salts compresses - help calm down the skin sensations
2. Rose geranium oil - helps with the skin pain and stabbing, and the scent is calming to me
3. Heating pad - helps when the pain is deeper, or maybe it just relaxes my tense muscles
4. Ibuprofen - helps with the aches
5. Acetaminophen - I don't think this works as well as ibuprofen, but I haven't given up on it.
6. Sleeping. I usually wake up at a level 0 or 1, and it builds up as I go about my day.
7. Sitting quietly. No friction when I'm not moving.
8. Exercise. Maybe it's true what they say about endorphins.
9. Sometimes stretching or scratching provides relief.
Things that make it worse
2. Lack of sleep
3. Possibly my hormone cycle; I'm not certain about this one
4. Sometimes, it's worse if I stretch, scratch, exercise, or sit still. Yup, these are also on my list of things that sometimes help. [eek]
5. Random triggers I may never be able to identify.
Do any of these things sound familiar to anyone else? Or is there a good possibility this isn't PHN but something else? Like, losing my mind?
Having deal with PHN now for 7 years it still is important to me to share information with others that are afflicted by this terrible condition or with others that suffer from chronic pain. Important because it is reassuring is to hear how others are impacted and trying to cope in their lives. It is terrible to constantly have to turn down or cancel social engagements because you cannot bare the pain, are so distracted that you can't focus on a conversation or do an activity that you enjoyed before. You get tired of responding to people "how do you feel" "how is it going" and many times you don't look that bad. One doctor said PHN is like the pain of cancer but without the relief of death. Not looking for sympathy from others but it is tough on family and friends given they don't really understand. I tell people now best the pain of a stinging nettle and worst is like a bad burn/scalding and rubbing sandpaper on it. People also don't understand (as I dont as well) why it strikes when it does. Everyday for me - but usually later in day after I have had too much irritation from the clothes. I want to say thank you to a number of people on this site for giving me my sanity back.
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I have lost hearing in that ear and bad tinnitus and imbalance. what can I do
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Six weeks on after first ever attack of shingles at the age of 75, I am Completely physically, mentally and emotionally drained, despite plenty of sleep and rest. Appetite is fine. Still suffering some ache in head owing to an effect called Cradle Cap which I have been prescribed ointment.
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I had shingles in October 2013 followed by what was assumed to be postherpetic neuralgia. I have tried all the various medication prescribed but appear to be allergic or react to all of them and none take you pain away. I don't know what to do next, seem to go from pillar to post.
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I had an xray done about a year ago as, (because I was involved in a car accident 3 months prior to the attack of shingles) it was thought the pain could be due to something else. It wasn't but the radiologist said that if I had a certain nerve 'snipped' in my back (left hand side) all should be well. Has anyone else heard of this. My doctor said they didn't have anything in writing from the radiologist to confirm this. I really feel as if nobody is much bothered about this sort of pain.
I do know for a fact that having nerve ends burnt off can stop pain. I had this done (privately when I was covered through work) in my neck which stopped the migraines I had suffered badly with for years. I no longer have private medical cover unfortunately.
I can can only sympathise with others who have suffered following shingles. The pain is HORRIFIC but the advice seems to be to take pill after pill and then If that doesn't dork have another ruddy pill.
I am just recovering from shingles. I have never felt so ill in all my life or been so tired. I have been left with intermittent pain in my hairline where the blisters were and also in my eye. It seems to come on every afternoon and last all night. My eye waters and I have developed floaters and blurred vision. I have tried paracetamol which helps with the pain but not with the sensitivity to light and blurred vision.I go to bed with a cold damp flannel but it doesn't seem to help much, my scalp also itches unbearably.
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My 88 year old mother who has dementia has developed odd sensations and pain in her upper back. She's had two bouts of extreme pain which moved around but were in a similar area of her back - lower ribs on left side. The pain lasted only for a day each time and each time I saw what looked like sweat pimples but they were on her upper chest at the front - ie a different place. Now she often feels cold and shivery (when in fact she is hot) and puts more layers on to the point where she starts sweating, feels pain in her upper back and gets very anxious when she gets it (most days in the afternoon/evening). She gets night sweats. Does this sound as if it could be left over from shingles?
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what can I have for an energy boost when I get off work to clean my house 34+2. &always exhausted
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I am stressed out. I feel older than I really am. I have a older brother. And everything we are together. People think I am the older brother. I don't have any energy. My body is 24/7 working to make me out of fat. But here is the flip side...
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I go to gym 4-5 days a week. I eat healthy. I lift weights. I run. I don't smoke and I don't drink. I go through times where I am happy and energetic. But mostly I am only down. And it's not psychological. I feel it's physical. I just don't feel like doing anything. Another thing..
About 2 years ago I did steroids. I have to say when I did steroids, that time period was the happiest time of my life. I was just happy. I had no worries. Even in problems I saw solutions. I was just happy. No anger issues. No depression. Not even a thought of negatively. I was just happy as crap. I had no worries. But BEFORE I did steroids and AFTER I did steroids, I am the way I am today. And it's getting worst. I'm getting more lazy. More tired. But I force myself to keep going to the gym to stay healthy. But it's just that I just don't have the want to do anything.
I don't know if it's anything to do with my depression, but I have absolutely no energy. I move so slowly that I look like a 70 year old. I feel wooly headed and don't fall asleep till at least 4 am every morning. I'm wasting my life sleeping all day. My doctor seems really disinterested in things and puts it down to my getting older. It feels hopeless that I'm doomed to feel like this for the rest of my life. Has anyone else had this feeling of living in slow motion?
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Remain tired and very low energy through the out the day. Take 21u insulin, met doing 75m ER, actos.
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I can't complain because everything is getting easier, and I am definitely much more comfortable than I was. My biggest problem is a complete absence of energy. I feel so deeply tired and fatigued. I had my first nights sleep last night, so why am I still not feeling like moving or doing anything? I want to play with my children, get the house organised and do productive tasks but just don't have it in me.... Is this your experience? Or should I be forcing it?
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I was wondering what type of ways you guys use to boost your energy throughout the day, whether its coffee, energy drinks, exercise, vitamins, etc. And how effective are these for you? What are negative side effects that you do not like from your energy booster?
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I've been on mirt 45mg since the end of April. i would say i've been ok on it mood varies until last week I thought I was back in a living he'll. I was suicidal mood very low no energy. i feel a bit more human today I just wondered if anyone else has suffered anything like this.
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22nd Dec I started on 30mg pred with high CRP and ESR. I stayed on this for 6 weeks when my bloods returned quickly to normal. Then dropped to 25mg ok and saw my highly recommended rheumatologist on 19th Feb who put me on a programme dropping 1mg every 3 days till 24th March. So in just under 5 weeks I will have dropped 12mg and be down to 13mg. I haven't had any pain luckily apart from twinges in my wrists sometimes, but all my muscles feel weak and I can only walk 1000 steps daily which is nothing for what used to be a very fit person. I am having easy physio involving using bands to strengthen the backs of the arms and the hips/buttocks and 1 to 2 minutes on my static bike but it doesn't seem to be working much . I am wondering if anyone else has been put on a programme such as mine as I have bad fatigue and no energy and have to go to bed and sleep for an hour after lunch in order to keep going normally for the rest of the day. I know that my rheumatologist doesn't like one staying on high doses of pred for long if at all possible and he said if I felt any pain I was to take a strong pain killer like Naproxen (which I haven't had to resort to) and not to put the pred dose up. Having 4 friends who all managed normal lives with PMR as soon as they went on to Pred I am feeling frustrated. I expect when I get down to 10mg and then take the very slow programme, perhaps my normal energy will return?? That's what I am hoping. Anyone experienced anything similar with a programme like mine? I am very careful with diet and look normal.
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I went today to a doctors appointment, he placed a headband on me hooked to a device. The device was then hooked to a computer, he said the device reads my energy and my vibrations. He said he detected many things. Like an allergy I did not know I had to bread. He also said I had blood in my urine. Also, he said that I consumed too much sugar, which I found strange since I drink mostly water and eat very healthy to my knowledge. After he was done with the test, he placed some pills, with no information on the bottle, on top of the device. He claimed that the device gave frequency from the reading in his computer into the pills, and that the pills will now work with the problems I had. I know about the placebo effect.
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My face is puffy, tired, dry; Head feels heavy; Cognition is not working properly; Muscles are sluggish; Energy levels are low; Constant sleepiness... Tons of visits do docs - everything OK. Tons of supplements and drugs - no effect. Free of thyroid, sleep, vitamin, blood, organ, allergy, lyme, hiv, virus issues etc. You name it. Started along with stressful period 2 years ago. Could it all really be some mental issue creating havoc throughout the body, i.e. psychosomatic? 21 years old male.
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Three months ago I had a Cystocele and hysterocele surgery, It was done by a good dr here in Spain, he promised everything was going to be fine and the sick leave was of 40 days. The surgery was through the vagina, he removed the uterus, left the ovaries and lifted the bladder with a "net". I was happy the following day: no pain, no feeling something was dropping out from my vagina... I had repose for one month and a half, then I Started to have stings inside, I came back to dr and told me I refused the stitches, he had to cauterize. Now the stings have gone but for one month I have felt the same sensations I had before the surgery! It's like someone were pulling from my top of the deep vagina, I feel again something dropping and feel as if I had something inside the vagina. My dr said everything is ok, nothing out of normal. Then I started to visit a pelvic floor physiotherapist last week and said that everything is ok the net is being absorbed by my vaginal tissues, but I'm still healing, the scars inside are tight and my pelvic floor is too weak. Besides she has found out that I have a little rectocele! And my gyne didn't tell me anything about that! I am so sad, I can't stop crying, too worried... I have not tried sex yet... I feel sad about my kid and my husband cos I am all day obsessed with this and I don't feel like going out... I used to be a sportive person but I am not anymore... By the way, I began work three weeks ago and feel too weak and depressed, Very hard for me get up in the morning, I went yesterday to the social security dr who is the dr that gives you the sick leaves and she prescribed tranquilizer and told me I can work. I feel I can't go on with my life... I feel that I'm starting depression, I know that if I felt a bit better I would cheer up but I feel worse. Please anyone can help me with any piece of advice? Will I ever be happy?
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I'm 19 years old . First time I ever smoked hash was when i was 17 years old i didn't like it very much as my life was perfect and enjoyed and absolutely loved being normal . i did not smoke again the rest of the year and then started smoking with m cousins occasionally for 2 - 3 months usually once in a week or once in 2 weeks then we all decided not to smoke and we all quit but this year had been a complete mess i smoked a joint when it was my best friends birthday 23rd january this year and from that moment on wards is smoked alot started from once a week and ended up smoking every day in summers for about 2 months with some unexpected gaps such as on a family vacation any ways for a month or so i have successfully cut back on the use by noting down the frequency of the use and now i take 3 to 4 puffs a week i have noticed that it did not cause any major problems for me besides i fell my memory is slightly of and the attention is a little weak but the most prominent problem is i'm not as energized as i used to be . i want hash to be completely gone from my life and how long it takes to my brain be completely back to normal and secondly it affected my skin badly its pale now and the youth seemed to be succked out of it with dark circles around my eyes and its making me depressed please just give me a timeline or just an idea of how long it will take me to recover from this so i can keep my self motivated.
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