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Weird Shingles symptoms

Posted , 22 users are following.

christine23937
christine23937

I was dx with Shingles last week. Rash on my left buttocks. But prior to that I had severe joint pain on my hands, knees and elbows. They put me on prednisone thinking maybe it was RA. Then after the prednisone I developed the rash. They put me on valtrex, neurontin, and norco. The weird thing is i have tingling in my left ankle on my achilles tendon region, my left ringer finger and pinky. Is it possible this is from the shingles and is the nerve irritation? I have googled until I am blue in the face and all it says is you get tingling where the rash is and that's all. Also, since being on the valtrex my joint pain has gotten better and so has my rash. I've been on valtrex for 4 days 3 gms a day. Also I am exhausted and all over body aches. Any insite to this would be greatly helpful. I am an ER nurse so I understand the disease but not these weird symptoms and my PCP doesn't seem to think it's related, but I can't help but think it is. Sorry for the lengthy post. And thank you in advance for help :-)

4 likes, 40 replies

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  • Jmac2
    Jmac2 christine23937

    Posted

    Hi Everyone I also suffer from reoccurring shingles. I have dealt with these break outs for four years now. Always on my right thigh anywhere from my bottom to knee. I feel like I have the flu for two wks before break out then about thirty days from then. I tingle every where, I don't like to be touched and it seems like I itch every where. On top of that my left jaw and sinus cavity hurts. I have broke out cleared up and two to three weeks later do it all over again. Then sometimes I can go three months. I blessed with a great husband he is so understanding when this happens. Take meds work okay but doesn't stop it. So for being so winded, it is so hard to find someone to understand what I go through.
    • Merry19451
      Merry19451 Jmac2

      Posted

      Dear JMAC,

      I am so sorry for your suffering from this excruciating disease. The pain, of course, is agonizing, but the other effects of the Herpes Zoster are caused by the viremia.

      Unfortunately, most clinicians fail to understand the full ramifications of this disease. I have had Herpes Zoster Oticus in my right ear every three to five weeks for the last 19 years. I understand the headaches, the flu-like aches and pains, low grade fever, fatigue, etc etc...

      Have you tried to take Famvir 500 mg daily to lessen the frequency of episodes? This regimen unfortunately failed to decrease the frequency in my life, but does help others.

      FYI : Acyclovir is the least efficacious of the antivirals.

      As you have recurrent Herpes Zoster, I would consider asking your physician for Neurontin or Topamax to reduce the pain and possibility of post herpetic neuralgia. I have been on Topamax for at least a decade and it has reduced the amount of pain I have, partially.

      I am so glad you have a supportive husband. Having a loving family makes a huge difference in your quality of life and living your life to the fullest.

      I am almost 64 years old, have autoimmune diseases, added to Herpes Zoster in the head, which increases the risk of stroke. I have had two ischemic strokes, but had tPA, the clot buster drug each time. Therefore, I am not paralyzed or aphasic. I tell you this to be on higher alert as you have recurrent Herpes Zoster.

      Please feel free to write further details. I am an NP in the States and know a great deal about this disease.

      I wish you the very best. I hope you have excellent Opioids for the pain. No one should be suffering from this.

      Always,

      Merry Juliana

    • Jmac2
      Jmac2 Merry19451

      Posted

      Hello Mary. I do take demerol for pain do to this, neuropathy in my feet as well as break outs of eczema. It seems if one thing acts up(whitch is all the time with my feet) everything is triggered. I am 55 and have been dealing with my feet for ten yrs now, shingles for four and eczema for a year. When I tell people that I am not able to do something because of one or all of these they ask what is the doctor doing. When I say all he can do is keep trying different meds. Unfortunately I have hepatitis C so there are a lot of things I can not take. I also have a body that doesn't agree with a lot of things. I don't volunteer for things at church or anything else because I never know what the day has in store for me. I don't have a lot of friends anymore because I can always do what they are. I know this probably sounds like a pity party, but it is not .You learn to do what you can have faith in our Lord and pray your doctor never dies because you may not get one who understands that you need pain pills. It took a long time to find one who would listen to me and not think I am a drug addict. Thank-you for listening I don't mean to go on and on. Thank-you also for info about drugs.
    • Merry19451
      Merry19451 Jmac2

      Posted

      Dear JMAC,

      As I take multiple medications due to medical issues, I understand the issues of interactions among and side effects on the body. I have peripheral neuropathy and Topamax actually helps tremendously with the severe burning pain.

      Perhaps you could ask your gastroenterologist if Topamax is contraindicated in Hepatitis C. It is metabolized through the liver, but a very safe medication.

      I also have eczema and use baby oil and Aquaphor directly after my bath.

      Your being immunocompromised certainly makes life more difficult.

      Our correspondence is not a pity party. It is a supportive mechanism to help one another as we all care about helping our fellow suffering friends. We too know how you feel.

      Best Wishes

      Merry Juliana

    • Jmac2
      Jmac2 Merry19451

      Posted

      Thank-you Merry I will inquire about meds with doctor. I found this web site by accident and am so glad I did. Will lock forward to more discussions. It is so nice to be able to discuss this with someone who knows what is going on with my body.
    • Jmac2
      Jmac2

      Posted

      Best wishes to you also! JonaLee McCollough
    • cindyd215
      cindyd215 Merry19451

      Posted

      Hi, 

      I am a nurse, 48 years old perimenopausal female.  I learn more from people who have experienced different illnesses.  I read your comments and I would appreciate your advice.  I had sudden sharp pain in my right groin and pain down my right leg two weeks ago.  Then 3 days later at work I developed a rash with small bumps down my outer right leg. It itched at onset but not much later.  My symptoms since are very tired, muscle aches, flushed  and yesterday I started having severe pain in both heels all day at work that felt like I was getting plantar fasciitis again. But today my heels are in less pain but I have  constant burning  pain in my left thoracic area, (no hx kidney problems),intermittent mild to moderate bilateral wrist, ankle, and hip pain.  I was in MVA accident and had bilateral palm area of hand burning pain and had c6c7 fusion about two years ago.  Pain stopped after surg but I started having mild to moderate burning pain 9 months later at times esp when I can tell my body is inflamed.  Today I saw my PCP and his dx was shingles bc the rash was linear in the L4 area.  My question is can a shingle rash not have blisters that crust over or be so small I didn’t see blisters? Also I didn’t have a lot of pain at rah site. I had several coworkers look at the rash, one said poss bed bugs but I didn’t have bites any where else.  But the others really didnt know        I know people experience different symptoms. Once I had contact dermatitis on my face that looked like small warts and it took 4 drs before one biopsied it. Sorry so long but if I know what I am dealing with I can try to deal with pain. 

      Thanks. 

    • Jmac2
      Jmac2 cindyd215

      Posted

      Hello cindyd215 sounds to me like shingles. I have been dealing with recurring for five years now. Before an set I am tired, usually a week ahead, pain down right thigh to foot, really sharp has lasted for weeks until out break, burning in spot that is going to be bump area. Redness, itching. Pain goes from right to left hip or this is weird part left to right through lower back and Virginia area. I have even broke out in that area, blisters come out pop, but pain will last for weeks. I get really grumpy and moody before and sometimes after out break. I take a low dose of Acyclavir 400 mg daily. I still get all the symptoms just not the blisters as much. I hope this helps you to talk about it. It keeps me from getting depressed over getting them. Bad thing is if no one has ever went through it they don't have a clue as to how bad it can be or how it makes you feel. Will keep you in my thoughts and prayers Jmac2

    • Jmac2
      Jmac2

      Posted

      You can have the symptoms weeks before blisters show up. Re-read your questions. They can also last weeks after break out.
    • Merry19451
      Merry19451 cindyd215

      Posted

      Cindy,

      If the rash is dermatomal, and red vesicle-blisters that occur in crops or waves over a period of up to 5-7days, especially accompanied by your aches and pains, chills and sweating, malaise, fatigue, or exhaustion, and you have a burning or itching pain, yes it is Shingles. You can have Shingles without the rash, Zoster Sine Herpete, in which a patient will experience burning pain, but no rash. In that case, it is wiser to treat with an antiviral, preferably Valcyclovir or Famciclovir, than not treat, as the complications of shingles can be disasterous, and Antivirals do stop the replication of the disease. Only if a patient has true allergies to all the Antivirals or contraindications would I not treat. Cindy, please make no apologies, life sounds very difficult for you, and I would rather help you. It sounds as if you have had a tough time these past couple of years.

      I hope this helps you.

      Best wishes

      Merry Juliana

    • Jmac2
      Jmac2 Merry19451

      Posted

      Hello Merry19451. I haven't been here in awhile. Glad to see you giving good advice as always. Hope you have a blessed day. Will keep up on posting.

    • Merry19451
      Merry19451 Jmac2

      Posted

      Hi Jmac!

      How are you doing? Still having PHN?

      If so, is it any less intense?

      I certainly am still getting the recurring Herpes Zoster-Shingles in my right ear every three to five weeks. I did have a reprieve for 8 months.

      Best Wishes

      Merry Juliana

    • Jmac2
      Jmac2 Merry19451

      Posted

      It still comes and goes. Some worse then others. All can do is " grin and bare it". LOL Not easy to do, but what is left.

      Good to hear from you. Keep up on the good advice. It helped me, know you can help others. God be with you, JMAC

  • andrea2423
    andrea2423 christine23937

    Posted

    I'm so glad that I found this site.  I feel horrible.  I was diagnosed with shingles on tuesday.  Felt bad 5 days prior to that, rash came out so I went to the Dr.  I was recently DX w/ RA and was recently on prednisone and on anti arthritic med.  3 precursors for shingles.

    But the carazy thing is I have pain on the opposite side of my body than where the rash is.

    Uncontrollable itching (even with benadryl) I go to scratch and no relief- like the itch is inside me.

    I as well was an ER nurse before getting into school nursing.

    So anyway today is the worst, I feel like ive been beat all over my body?  

     

  • thinsport
    thinsport christine23937

    Posted

    I totally understand! I have no pain in the area where I get shingles on my back. I always have some sort of joint pain in my low back, hips or hamstrings before the shingles appear on my back.
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