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Shingles pure exhaustion

Posted , 13 users are following.

Mitzygirl1973
Mitzygirl1973

Last week I had lower back pain and thought maybe I had somehow bruised the area than I felt a small bump a few days later which was painful by the next day the pan was unbearable ask hubby to take a peek and he said it looked like a heat rash.  Well by day four I could barely move.  Went to the doctors feeling very embarrassed over such a small thing but I had constant migraines, so tired that I could barely lift my head and the rash was like lil knives in my back.  Well was diagnosed at 44 after a second dr took a peek too with shingles and was swapped for strep throat and blood drawn for mono.  They put me on an antiviral and bed rest.  Both the intense pain, migraines, nausea and exhaustion is crazy.  I can barely lift my head.  I am a mom and can't be down and out like this.  

Did anyone else have similar symptoms?

I am honestly worried I will end up in the hospital.  I am auto immune suppressed.

2 likes, 41 replies

41 Replies

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  • alison63966
    alison63966 Mitzygirl1973

    Posted

    I'm is just awful - poor you - please listen to your body and rest - it's so important to Be kind to yourself and not push yourself - I am heading for week 5 after spending the last 3 weeks in bed most of the time - my energy levels are very low although the last few days I have managed to get up - and do some me walking ... which has been great but I can feel my body is really tired as a result - take care 

    • Mitzygirl1973
      Mitzygirl1973 alison63966

      Posted

      Oh my.. that's absolutely horrible my heart goes out the you.  It's tough because Hubby works so hard for us and puts in 12 minutes lus hours a day.. not by choice pretty much mandatory and no family around to help.  I have reached out to mom friends with help for my middle schooler but I will still have to get up and get her to activities.. just will do lots of in between napping and hubby will take over on weekends 

      Healing thoughts sent your way! ??

    • Merry19451
      Merry19451 Mitzygirl1973

      Posted

      Mitzy,

      I do feel for you, and know how it is. I was a single mother of a young son when I had it, working and going to grad school. It took four physicians to diagnose it, but of course by then the Antivirals we're of no use. I received no analgesics. I pushed through it, and have the recurring Herpes Zoster-Shingles as a result.

      As you are immunocompromised, you are at a greater risk for recurrent Herpes Zoster-Shingles.

      I wish to tell you about the importance of following the high Lysine low Arginine diet. The Herpes virus is triggered by Arginine. Lysine protects our body against the varicella Herpes virus. If you Google the high Lysine low Arginine Herpes diet, you will find a list of foods you can eat, and those to avoid. Remember, it is the ratio of Lysine to Arginine that is important. Some individuals take Lysine supplements, but I prefer to just follow the diet, which is similar to the Mediterranean diet, anyway. It had helped decrease the frequency and intensity of pain of episodes.

      How is your pain level now?

      You also mentioned migraines.

      I am a severe migraineur, and the only pain that exceeded a migraine, if that is possible, was the shingles in my ear..

      I take Topamax prophylactically for Migraines, and have not had a migraine in over 15 years. That to me, is a miracle.

      Best Wishes

      Merry Juliana

    • Mitzygirl1973
      Mitzygirl1973 Merry19451

      Posted

      Wow I didn’t realize there was a diet... I do take 2000 mg of Lysine daily but that obviously didn’t help now did it.. I will be looking into the diet for sure.

      I am gluten free which helps some for my other issues.

      Unfortunately I am allergic to many of the medications for Migraines that people take daily to prevent them and of course Topomax is on the list.

      I have been referred to a Migraine Specialist in Worcester MA.  Which is a hike but if they can figure it out totally worth it.  Waiting on ok from insurance company because it’s out of state.

    • Merry19451
      Merry19451 Mitzygirl1973

      Posted

      There are other medications for Migraine prophylaxis, and I am or have been on most, but Topamax works like a charm for me. My identical twin cannot take it as she gets too spacey on it...

      Please keep us informed as to how you are doing!

      Best Wishes

      Merry Juliana

  • Merry19451
    Merry19451 Mitzygirl1973

    Posted

    Dear Mitzy,

    I am so sorry you are going through this. I too had my first episode at 44 years of age.

    Your symptoms are classic for Herpes Zoster-Shingles. The varicella virus is circulating in your entire body. It is not just a little rash and some pain.

    The severe headache, possible photophobia, aches and pains, fatigue and exhaustion, and lancinating burning pain are all part of Shingles. You cannot power through this.

    You need to rest and sleep. If you need help with the children, perhaps relatives can help or your husband can take off.

    Also, it is imperative that your pain be well controlled. You should be prescribed an Opioid for the acute pain. Physicians are more reluctant to prescribe Opioids now, but it is their duty to alleviate suffering. Shingles is one of the most painful afflictions of mankind, as you have now experienced.

    I am a Nurse Practitioner in the States and have had Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty one years.

    I also am immunocompromised with SLE, ITP, Psoriasis, Sjogrens...and breast cancer-excellent prognosis.

    Please let me know how we can help you.

    Best regards

    Merry Juliana

    • Mitzygirl1973
      Mitzygirl1973 Merry19451

      Posted

      Thanks for your response.  Unfortunately due to my declining health I sues and need for multiple surgeries etc I became unable to work 5 years ago and ultimately fully disabled which was crushing considering I had an after school job at age 10 babysitting neighborhood children at brilliant parents got home from work and than started working right after my 15 th birthday part time after school and held 3 pt jobs because no one hired teenagers full time back than until 18 when I started full time in banking after graduation and worked my way right up to Mgmt, Bank Officer etc... 

      I live with chronic pain so I honestly don't like opioids because of potential dependence on them.  I am from the Northeast and there is a huge terrible drug epidemic here.  I try prescription Ibuprofen, Naproxen, heat, cold you name it for pain relief.  My dr and I are looking into medicial CBD oil as an all natural

      alternative.. my state is very strict on therapeutic marijuana in any form.. but I am allergic to most pharmaceutical pain relief medicine from many categories not just opioids.

      Thanks for your kind words but it's upsetting to know it's something you continue to battle with.. I am so very sorry 😞!

      It's sad knowing this is a re-activated form of the childhood chicken pox I had as well as the Mono or EBV is re-activated from m the mono I had back during High School and my dr thinks they actually played/triggered each other.

  • sheila24138
    sheila24138 Mitzygirl1973

    Posted

    Hi Mitzi. I too had similarbas you. I was misdiagnosed with the rash it was contact dermatitis. Three days later back to the doctor with extreme pain and told I had shingles. I too like you was exhausted felt nauseated just wanted to sleep etc. but I’ve been told Justus you been informed to get lots of rest and not power through it. It is a strong virus  and your body needs a strong immune system to fight it off. Try not to get stressed and eat properly and sleep as much as you can and it to will soon leave. Everyone is different with shingles some have them in different places and summer over them and 4 to 6 weeks and some of them take much longer so the more you can rest and relax the faster it will happen. I am now two months with some recurring symptoms but no longer the Excruciating pain. Take care and wishing you well soon
  • usmc1963
    usmc1963 Mitzygirl1973

    Posted

    I am a 72 year old male with a similar story. I suffered for several weeks with lower right back and right stomach pains, thinking I had hurt myself working. I developed a rash in those areas and thought it was hives from stress. The pain became severe and stabbing. Diagnosed immediately by the Doctor as shingles. Still in dire straights after 5 weeks of this. Had to stop running and power walking. Not sure if end is in sight. I cannot suggest any relief, just keep reading forums and try any possible remedies posted, maybe one will help. Try and stay sane!! 
    • Mitzygirl1973
      Mitzygirl1973 usmc1963

      Posted

      Thank you for sharing your story with me.  The nurse in my doctors office just called to check in to see how my weekend went my reply was horrible... I had severe migraines, fevers, chills along with the shingles pain and could barely lift my head from m my pillow.. she said yeah it’s a nasty virus and has to run it’s course.. 

      I said just trying to figure out how the heck I am going to deal with taking care of my kids and driving to get them afterschool.. ugh

      I also told her I love her.. lol 😂 she laughed and said she loved me too.. goodness gracious I am losing my mind

      Hugs to everyone god my through this right now! 

  • steven929
    steven929 Mitzygirl1973

    Posted

    I have been a repeat shingles sufferer for going on 6 years, averaging approximately 6 times a year. I will attempt to synopsis the progression of events. 

    The first case was observed with a small patch of blisters on the center of my abdomen between navel and crotch. The pain was only minor at the rash site, but became sever subcutaneously, and traveled around my right side. I was debilitated for close to 5 weeks. I had a second bout about 1 month later, with pretty much the same symptoms but about 50% less intensity. 

    Since then I have had reoccurring cases that can be as frequent as twice in a month (short lived) or maybe last near 4 months without an episode.    

    Now I can usually feel it coming on with a near instantaneous episode of dizziness, weakness beyond belief (if somebody else described these symptoms to me I would think they were NUTS)  this usually passes in 3 to 10 minutes, but I remain weak for days, and then the minor pain will begin to emerge within 4 or 5 days. I often am quite disabled from fatigue for anywhere from 5 days to 2 weeks. I'm lucky that I my children are out of the nest and my wife works because it has had an impact on my ability to earn a living (I'm a carpenter) 

    When my wife found this and other web sites I was relieved to know that there were others out there that had the same complaints. I was beginning to think I was a nut job. Now I know I'm a nut job, but this condition is "REAL"

    Good Luck,and take care, Steve.      

  • arlene_16643
    arlene_16643 Mitzygirl1973

    Posted

    Same thing happened to me!  I am 56 and think mine was brought on by stress from remodeling and holidays.  Thank goodness didn’t have migraines, only headache.  It has been about 5 weeks since first sign of what I thought were insect bites.  When I talk about it I feel like people think I’m making it up or being dramatic.  It so hard to describe the exhaustion from it.  I quit taking the antiviral and codeine because I felt like they were making me feel worse.  Now I’m wondering if it was the virus and probably should’ve stayed with it.  I am so glad to find this forum and others going through the same thing.  I don’t feel “crazy” now...  have you heard of olive leaf extract?  It seems to be a promising natural antiviral when taken in high doses.  I’ve purchased some and hoping it will help remove this awful stuff.  My mother in law had the shot and has still had shingles 3 times.    Same thing with an uncle.  How are you feeling now?  Thank you for starting this thread.
    • sandy40039
      sandy40039 arlene_16643

      Posted

      I use the Olive Leaf. It is what gets me through. The Nature Valley brand is best with the oleuropan (spelling?) I seem to be constantly having a few symptoms at a time. Unlike most everyone's story, I did not have the blistery rash. Where I did have a reoccurring rash it is sensitive, painful, itchy and that area of my spine is constantly tender and in discomfort. My reoccurring symptoms have been going on for two and a half years. I have given up on the medical community diagnosing me or treating me. The Olive Leaf seems to help some, but I have had migraines. Excedrin seems to allow them to be tolerable. All of my pain and symptoms seem to be on the same side as my rash and pain that started in the area of my upper back. My neck, ribs, lung, clavicle, shoulder, & joints will hurt all the way down to my foot. One of the worse things is getting fluid in my chest and having difficulty breathing. I went to a cardiologist and nothing is wrong with my heart. I alleviate this with essential oils in my diffuser of eucalyptus and peppermint. My digestive system does not seem to function well and so I take milk thistle herb to cleanse my liver and apple cider vinegar. I have come to find out that I am low in potassium. I have often experienced swelling on my left leg. My left leg has been so swollen that it was picked up by TSA when I was travelling. They picked it up both directions of travel for that trip. The first couple of years the fatigue was too much. I usually get home from work at 6 and would just go to bed an hour later and sleep through the night! When I started using the Milk Thistle to cleanse my liver I began to have energy. I was so glad to figure out what could help my shortness of breath with the fluid filling up in my lungs. I had such a good exercise routine before this. I will try to do what I can, but some days it is about breathing. I have noticed stress exacerbate it. I have noticed the diet mentioned above to be helpful. I work in an office and can deal with these things most days, but can used my PTO if I have to call in sick. I feel blessed for that. I do sometimes feel as though it interrupts my digestive system. My left ear has experienced some pain and I have had dizziness. The only thing I can do to stave off the symptoms is the Olive Leaf and now the diet. I am tired of this, but as I have learned to cope in my own way, I don't really care to tell my doctor my symptoms for her to be clueless. I have tried a few internal medicine doctors. It was suggested to see an infectious disease doctor, but I will have to send my chart to her first. I don't have any more patience to try another doctor as pertains to this issue.  

    • arlene_16643
      arlene_16643 sandy40039

      Posted

      I am so sorry you are having so much trouble.  I am finally mostly over my exhaustion and no pain but still not 100%. So much better though.  I like you didn't have much of a rash.  It was definitely internal.  I was taking a brand of OLE with 25% oleuropan and was too strong for me.  My husband takes it daily for high blood pressure.  I switched to Immunopoint and seem to be doing better.  It has some other great stuff in it as well as olive leaf.  I religiously take vitamin d3/K2 along with, Vit C, good probiotic, prebiotic, selenium, iodine, magnesium, and a B-complex.  Sounds like a lot but I feel so much better.  Oh, and when I remember I drink apple cider vinegar.  Vitamin D3 K2 is very important....  Drink lots of water daily.  I hope you feel better soon.

    • sandy40039
      sandy40039 arlene_16643

      Posted

      Thank you so much for the advice concerning all of those supplements. I don't drink the apple cider vinegar. I take them in capsule form. I really like the capsules from herbalhealer. I am glad that you are feeling a lot better. I hope you feel better soon. 

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