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.
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
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
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
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.
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! ❤️
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
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.
Thank you for your kind words! ❤️
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
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!!
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!
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.
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.
Your not alone. I was diagnosed with shingles a couple weeks ago. This is the second time i have had it. I went to the ER thinking at my kidney stone was giving me trouble. Having all tests done in ER with no luck and no pain relief, i came home and found a small rash on my back. Two days later my pain was worse than kidney stone so i ended up at the drs with shingles wraped on my right side of body. Now that it has been 2 weeks, i was given lodocaine patches. They are aupposed to numb the area but it doesnt do much. Im extremly exhausted and in horrible pain. Im waiting to go to a pain dr or holistic dr. I hope your exhaustion has led up. As a mother it is hard when all u want to do is sleep and try not to move because any moves makes me want to cry. I hope my pain lets up so i can start working out again.i hope you found the proper meds to help with ur pain.take care Thanks for ur discussion.
Skye,
I am sorry you have Shingles, again. I do not know your age, but get your Vitamin D levels checked. I was having recurrent Herpes Zoster-Shingles every three to five weeks in my right ear for the past twenty-one years and twice in my right eye. I started on Vitamin D3 2000 IU daily supplements and have only had it once the last 6 months. Vitamin D3 is important not only for bone metabolism, but for immunity, and tissue healing.
I am a Nurse Practitioner in the States.
Best Wishes
Merry Juliana
Thank you so much for starting this discussion. I was diagnosed with shingles 11 days ago. The first thing I noticed was minor like a couple of insect bites. I got the antiviral, Lysine supplements, and changed my diet. I am so grateful to have only minor symptoms as pain medication is not an option. The one symptom I have which is a battle is I lie here barely able to lift my head. The phone I type into weighs almost nothing but seems to want to drop out of my hand. I have been trying to force myself to get up and do something and if not for this discussion I may well have succeeded in making myself much sicker by doing so. Thank you so much I am so grateful to everyone who chose to write into this for sharing your experiences. You have given me the extra nudge I needed to give myself permission to stay home and rest. God Bless you all
Susan,
I am sorry you have this disease.
The physicians never tell the patients about the accompanying symptoms of Herpes Zoster-Shingles, especially the severe fatigue and exhaustion, and malaise. In fact, in order to recover more quickly and have less pain, individuals need to rest and sleep, and eat nutritiously.
We are not used to spoiling ourselves, but this time you absolutely must, or you will feel worse. I hope the pain is under good control, Susan.
I am a Nurse Practitioner in the States.
Best Wishes
Merry Juliana
Thank you Merry for taking the time to reach out. I have difficulty spoiling myself. My illness is compounded by insomnia due to PTSD and lying in bed often brings on feelings of guilt. People like you who take the time to reach out with concern and advice from a professional perspective help me to know I am not being lazy when I allow myself to rent even if I am not able to sleep. God Bless you.
Susan
Susan,
I also have PTSD, and other issues, so I get it....but I know what happens if you don't rest...
Please take care of yourself.
Merry Juliana