Exhausted post shingles

Am sorry I no answers for you seems to me it just seems to flare up n leave you exhausted me with an awful headache. Good luck hugs 👍❤️ The others are better to really than I am

Hi Jennifer,

Exhaustion is part of the symptoms of Herpes Zoster-Shingles. You have a viremia circulating in your body. The exhaustion can last two weeks or four-five months. I doubt that it will last very long with you as you seem to have been spared the debilitating symptoms of severe pain, fever, chills, sweating, malaise, fatigue, etc.

I understand the fatigue is difficult for you, as it is for everyone, but it is of limited duration. Please be patient with yourself and give your body the rest it needs. When you feel tired, sleep.

I get recurrent Herpes Zoster-Shingles every three to five weeks for the last 20 years. I am therefore, fatigued every three weeks and in severe pain. I have learned to take life as it comes. I hope this helps you.

Best Wishes

Merry Juliana

Merry, I too am an RN, albeit a very old one of almost 80.  Two years ago i had a light case of shingles after having the vacination two years previous to that!  Over time as a teen I recovered debilitating diseases as polio, Malta Fever which affected muscles and have I have muscle pain so therefore i tire more easily.  Yet I have more desire to 'Get up and go', than many other women.  I have had UTI's and IBS v. often and this has increased to almost monthly as I have aged with more after the shingles. Right now I am very tired and have more pain plus UTI and IBS almost weekly.

Not to frighten anyone but while in the States I met a well educated man in a wheelchair who was quite unwell.  He said that seven years previously he was very healthy and had shingles. The decline in health increased from a healthy young middle-aged man thereon.  The doctors contributated the debilities to shingles after many, many tests, etc.  He passed away this past summer.  I have not heard from family to learn if an autopsy gave us more clues.  

I am aware that at my age but also good activity levels and outlook, plus how well I look on the outside all is not working to my benefit to live a longer, healthier life.  Stress of family, their health and my own, little enough good sleep and constant travel to help family is not helping me cope with the pain.  

I take Paracetamol 2 to 3 times daily for the pain and was prescribed Neurontin 300 mg for constant pins and needles in my feet and hands- (Circulation?) and now I am experiencing swallowing problems.  The GP's here do not appear to  know how to handle my medical case due to time and are slow to advise I go to a specialist that can look at all.  I'm not ready for a wheelchair or any other means except relief from pain, better muscles and good sleep and loving, caring people!  

There must be more we can do for what I am calling Post Shingles Syndrome.  What research is occurring around the world?  

I like your last sentence two paragraphs (but of course not where you have recurring pain and fatique).  With demands upon me that is difficult and to get by with less muscle pain would be a boon!

Thanks and best to you,

Take care!

Avey Kirwi

   

Dear Avey,

I am sorry that you too had shingles. The chickenpox vaccine is highly effective if given in two doses. The current Zostavax Shingles vaccine is only 51% effective in preventing Shingles, but supposedly many individuals have a milder case of Shingles. There is a new Shingles vaccine by GlaxoSmithKline being released this year pending final approval by the FDA that has ~ 98% efficacy. Whether it will help individuals with recurrent Herpes Zoster-Shingles remains to be seen. I intend to take it.

I use an integrated approach regarding the Zoster treatment. Obviously, I use an antiviral. Famvir is most effective for me. I also need an Opioid for the excruciating pain. I take Topamax 100mg 2x per day as a migraine prophylaxis and I am certain that I have avoided PHN. I also use Auralgon Otic Drops as the benzocaine soothes the pain on the eardrum. I have Ramsay Hunt Syndrome or Herpes Zoster-Shingles Oticus. With this approach, I need less Opioids. I have had two ischemic strokes, which I am certain that the Zoster was a predisposing risk factor. Fortunately, I recognized and diagnosed the strokes immediately, and received the clot buster drug, tPA. I do not have the paralysis, aphasia, tunnel vision, ataxia, etc that I would have had, otherwise. I consider myself fortunate. My family is very supportive.

I do not think the medical community has done anything regarding research except the new Zoster vaccine. They will do meta-analysis statistics regarding frequency of Zoster correlating with strokes, cancer etc, but no worthwhile research. The antivirals came out due to AIDS research. The medical providers are often abysmally ignorant regarding this disease and how to treat it.

Best Wishes to you

Merry Juliana

Merry, I didn't remember to ask if you have learned of neuralgia in hands, feet and extending into legs and arms?  What has happened with these nerve endings?  It appears that my nerves are damaged to  the extent of ding out and the I move my legs, arms, body but eventually have pain and tiredness or exhaustion and need to rest when the pins, needles and radiating numbness starts over.  Will the Gabapentin help? What else is possible?  Are any doctors being educated to these sites? Medical schools and universities?  Why can't we have forms that would be of use or is each case so dissimilar?  Can we start something to help in research?

 

Hello again,  I looked up medical research and nothing except vaccine research is ongoing but a few articles mentioned pain and medications. Gabapentin is good .  I'll ask the doctor for something other, Polidar, as the Amytrityline made me forgetful and in a daze. I'm hopeful it will help if available.  I've aged so much in these two years, my posture and arthritis is bad and previously I was like a 50 year old.  Group exercise is difficult due to pain or sleepless nights.  I'm wondering about protein supplements to help our compromised immune systems as I even had a mild pneumonia a year ago.  I am taking too many medications and have cut down to aminimum but when an antibiotic is needed ( which is too often due to UTI) I know I will have exhaustion again!

Cheers and smiles to all of us!

Avey

Hi!

Recovering from Herpes Zoster-Shingles is a process. You have a major virus that has attacked your cranial nerves. The symptoms you are experiencing as a sequelae are to get expected. You are correct in avoiding caffeine. I would avoid meat, fish, and poultry, and stick to uncooked vegetables at first. You might ask your physician for an anti-emetic. Toast, applesauce, rice, broth often are easily tolerated. It is important to rest and not overdue it. I know you are used to an active lifestyle, but give your body a chance to heal. I have had Herpes Zoster-Shingles in my right ear every three to five weeks for the last 20 years. I am a nurse practitioner in the States. Let me know how I can help you out.

Best Wishes

Merry Juliana

Thank you, I did not check any site and also felt I was well rid of all. Then came exhaustion with no understanding and I still carried on so now more than a year later I am again very exhausted and committed to travel and care which cannot be cancelled.  They will get minimum and I will get rest which I seldeom get enough of no matter where I am.  So always gauge yourself and do not commit to more as just the little extra you are doing now will have an affect on the future and I don't want this for any of us.  I guess less is better than more.  But we also need to live.  Short vacations with relaxation much of the time!

Thank you for your wise words. I still can't get over how debilitated I feel. The headache is improving though thankfully. I will make sure I really take care and boost my immune system after this.

Dear Denise,

I am so sorry for your suffering. Although I am glad that you do not have intractable pain, the accompanying symptoms with Herpes Zoster-Shingles are just as bad. It is significant that many clinicians fail to comprehend that fact, as well. You still have the effects of the Herpes virus that circulated in your blood. Fatigue is a huge compaint. The severe fatigue lasts 2-3 months in many individuals, and a few people state they have it a year later. The mental confusion and emotional labile moods also occur. Many "friends" presume to judge others with "invisible" disabilities.

I am a nurse practitioner in the States. I have had Herpes Zoster Oticus in my right ear every three to five weeks for the last 20 years. Where was your rash? Hopefully, if you have children, they are old enough to fend for themselves.

Please let me know how I can help you.

Best Wishes,

Merry Juliana

ohhhhh denise = i am soooooooo sorry. for me the fatigue was the worst part (1st sign of 'em 1/9/16). the pain was tolerable and the rash an annoyance.

but i still think i have lingering fatigue or maybe it is depression 'cuz of the lingering feeling of fatigue anyway i pray you get over it super fast and are back to your normal normal

Hello Merry Juliana. Thank you for your lovely reply and support. My rash is on my thigh near my knee. I don't have any children besides a husband and a dog.  My hubby has been/is lovely with me and seems to understand I'm not normal, Even the dog is being quiet and happily sleeping along the side of me whenever the need takes me. 

In the past few days my breathing seems to be getting worse when I take the dog a walk. I am SO happy to have found this forum just knowing I'm not the only 1. Folk seem ignorant (me also prior to Shingles) to the other side effects of Shingles.

Thank you Sandi. I'm SO hoping this passes sooner rather than later but reading all the other ladies comments its not looking good. XX

 

Denise,

Yes, I love your comment about having no child besides a husband and a dog. I know that our fur persons understand our ailments, unconditionally. I am glad your husband has been lovely. My family has been wonderful to me, as well. I think of recovery from disease and surgery, etc as a process. Tincture of time heals all, so sayeth Mother Nature. I have learned to be more forgiving of myself, the housework, etc... I had two strokes, but had the clot buster drug tPA, and thus am not paralyzed on each side, aphasic with tunnel vision. I also had cervical and lumbar Laminectomies & Fusions. I had a partial mastectomy last year and radiation. I only share this for the following reason: I know about the process of healing and recovery and giving yourself permission to take things more slowly.

I had to learn to ask for help when I needed help, which was very difficult for a fiercely independent female.

If you remain short of breath while walking your dog on Monday, please get it evaluated ASAP!!!! This virus can do funny things. You should not be having breathing problems!

Best regards,

Merry Juliana

Please keep me posted.

Denise, I've been overtly emotional too but think that is as much to do with meds and feeling so out of sorts. It's even more noticeable if you are someone who is never that poorly or off work. For years I have craved a month where I could 'catch up on myself' and now I have had that time but have literally been floored and unable to do anything. So frustrating. Grrrr indeed!

Hi Reubens mum. You sound so like me. I joke all the time when someone asks how I am at work saying I wish I was poorly so I didn't have to be there and could catch up on things. LOL So the shingles have shown me a good old lesson. I'am 50 and all my working life have only ever been of work once when I had an operation so this has really taken me by surprise as to the severity of it. I've been out a nice walk today with the dog and my breathing was OK till the weather changed then my chest got tight but I was almost fininished so I soldiered on as they say. My sick note from work runs out in a few days and they want me back BUT I don't feel at all ready so I won't be flavour of the month when I send 2 more weeks in. Take care. X Denise

Hi Denise - yes we sound alike! I am now improving but still have that flu-like shattered feeling and continued pain all around my ear. On a plus my vision is returning! (Side effect of steroids I think - right eye full of 'floaters' and very blurry.) And I am less dizzy. Hurrah! I went for a walk last Wednesday and was really proud of myself only to be barely awake the day after! It seems if I do anything normal and at usual speed I am then floored for 24 hours. I have now been off work for four weeks and feel frustrated, self-conscious & a bit low. I am 51 and am sure that menopause changes have influenced my immune system. I am going to make lots of proactive changes when I get better. It grates that I've been off work as I know I would feel better being there instead if being stuck at home. (I'm lucky - I love my job and the people I work with are a tonic in themselves!) I am hoping I make leaps forward over the next few days. Keep grrring - but don't stress that it's slow progress as that won't help you. Said the pot to the kettle! Let me know how you are. Sarah x

Hi Sarah. WOW again I could have written the message you have sent...besides liking my job. lol. I had the best day ever on Saturday so I walked the dog (hubby wouldn't walk on his lead so stayed at home) for 3 hours and felt wonderful, got home and did so very overdue housework. Ha Ha did I pay for it on Sunday, If I was awake for 5 hours during the day I was lucky. My blurry eyes seem to be getting better but I'm finding when I turn quickly (eg in the  kitchen grabbing pans etc) I feel very lightheaded. I was seriously thinking about returning to work tomorrow but today has proved I'm SO not ready yet. I got up at 6.30am after 11 hours sleep and walked the dog till almost 8 ish then felt awful and ended back in bed for a further 5 hours solid sleep. Oh well its another GURRRRRR from me. Hey on the bright side as I've been sleeping so much I've not been eating so I've lost 11lb. YEAH. Please listen to your own advice and take care luvvie. Keep in touch. XX

Hi Denise - I just thought I would see how you are? Are you improving? I'm just sitting in a slump of continued lack of energy & oomph but following a week back at work (really good), with far less headache (really good), eyesight pretty normal (whoopwhoop) but still half my face and ear feeling like it is burned and sciatic (still grring on that one). This is by far the worst and most unexpectedly horrid thing I have ever had. I even went straight to bed when I got home from work every day - what a wuss! I had grand intentions of what I would achieve today oh well always tomorrow I suppose. If you are heading back to work please take it steady. I should have done a little less! Take care. Sarah

Hello Sarah. So nice to hear from you. You sound as though your doing fab...don't push it too much, easier said than done I know. Well I felt ok ish so went on a weeks UK holiday with hubby and dog. What a waste of money cause all I did really was rest/sleep. I went on only 2 long walks as I just have no get up and go what so ever. My get up and go has got up and gone. I went to sleep early Wed and woke up on Thur feeling uttlery rubbish. I have almost lost my voice....now there's someone in my house rather pleased with this....and have a very dry painful cough, Its just 1 thing after another isn't it. I am going to go back to work on Tue as my poor work mates are inundated with work. I can only giive it a try. I have been sleeping 16 hours a day since being ill so it'll be interesting to lead my normal day where I get 6-7 hours. As hubby said I can always go back off sick if it doesn't work out BUT I feel ready as I don't seem to be getting any better so I'm hoping a jolt to my system will help. Your so NOT A WUSS luvvie your ill. This horrible virus can stay around for 12 months,,,,please no. XX take care. Denise