posted
It looks like I have shingles and would like to hear from others who have been through it.
It started Monday during a heat wave and looked like patches of heat rash between mt breasts and on my back all on the left side of my body. It started as little dots and progressed to red blisters. It now looks like some pictures of shingles I saw. Today there is a patch of new little dots on my breast they are along the same nerve pathway as the others.
I've been sleeping more than usual and my lymph nodes are beginning to swell under my arms.
The patches itch and burn. There are some stabbing pains and tingling too. I had deep itching and burning in those same areas for almost a week before the rash started. It is worst at night and wakes me up.
I've heard shingles is really painful and am trying to figure out a timeline for how bad it gets and when. I have several important activities coming up over the next week/month. I don't know if I should cancel. Right now the pain is no worse than what I lived with during the worst of my Lyme. Keeping busy helps take my mind off the pain.
I've been living with pain from Lyme for 2 years. Right now my Lyme symptoms are minimal. So far the stabbling & tingling from Shingles are nowhere near as bad as what I had during my first 6 months of Lyme. The itching & burning don't go as deep as the horrendous rib & shoulder pain I had for 2 years (on & off). I suppose if I hadn't gone through the awful Lyme pains, what I am going through now would seem bad!
What were your experiences? Is this as bad as it gets? Does shingles peak at a certain point? Is the pain worst when the blisters develop or did it get worse after they drained? How long did it go on, what helped you cope with it, did you stay functional etc.
Thanks for helping -
Hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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posted
Hmmm....have you checked out the possibility of a yeast-type rash? All I've ever heard and experienced about shingles is that they are VERY painful. Excruciatingly so!
My mother had them once and she went from OK to SEVERE pain in a matter of hours.
You need to have a dr look at that. If it's shingles, you need to be on something like Valtrex. [I am not a dr!]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I'm with Lymetoo. I had shingles in 2004 and I went from 0 to 1000 on the pain chart in a matter of an hour. It was my first night on a cruise ship and the ship's doctor gave me plenty of injections and oral pain killers like vicodan and percoset to no avail. AAAHHH!! He suspected kidney stones and I spent a full day in the Quebec hospital trying to communicate with French doctors who spoke surprisingly poor English. They ruled out kidney stones and suspected shingles but there was no rash yet. The rash appeared days later.
Luckily the pain subsided and I got to enjoy the rest of the trip. When I returned home, I went to our doctor (it took that long for the rash to appear) and he prescribed a drug that began with a V (?) forgot the name.
If you are not experiencing some of the fiercest pain ever in your life, you may not have shingles. Man it hurt!
I had HP Ulcer in the spring of 04, Shingles in fall of 04 and Lyme in Aug 05. I was going through a 4 year period of stress hell in my life and truly believe this brought down my immune system and allowed the lyme, yeast, parasites etc to take over my body. Now I am trying to regain my health and take back control from the "body snatchers".
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I just saw my my 96 year old mother through a bout of Shingles last year. It was very painful and lasted for at least 6 weeks. My mother is not one to go to the doctor for anything (which is probably why she has reached her age, I believe) so I started baking soda poultices on her and she took Mag Phos cell salts for the pain alternating with Ferrous Phosphate cell salts for the inflammation. Open leisions I would clean with Hydrogen Peroxide and then put Emprizone (an AloeVera prep)on them. It took time but it did the trick and today she has only a little discoloration in a couple of the areas where the leisions were worse. My son had a small shoulder only spisode when he was about 7 or 8. For him I had put on the Ferrous Supphate cell salts crushed in a little boiled water. His was not terribly painful and was relieved by the poulticesapplied and reapplied frequently. With all the pain of Lyme, I am so sorry to hear you hav this added to it. You are in my prayers for a quick recovery, if that is possible.
-------------------- Virgil and Mary Posts: 58 | From Wisconsin | Registered: Jul 2006
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posted
get some Valtrex or another antiviral PLEASE. NOW, PLEASE. It can make all the difference in the world--in terms of this NOT becoming a long tme problem.
and take it longer than just a few days (sounds familiar?)
take care!
jif
Posts: 208 | From Santa Fe | Registered: May 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
H & S..My mom had them approx. 3 years ago and still has some trouble with them..But she is a picker..
She had meds from the Dr and I also got her benadryl pills and cream and alveeno salve and bath things..
She said it was impossible to leave them alone..
Now a couple still irritate her.. Good luck..
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I think there is quite a range of experiences with this. My mother had a really terrible case of shingles after surgery for lung cancer. It never did clear up even tho she was readmitted to the hospital specifically to treat it.
My case, on the other hand, was not severe. Lasted about a month. This was several years ago and related to immune system down from lyme, IMO.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I had shingles about 10 years ago. It started out just feeling like my skin "hurt" on the right side of my rib cage. By the end of the day it had progressed to definite spots and a couple days later they became blisters.
For a day or so before the onset of the rash, I was so tired I could hardly function.
My doctor put me on an antiviral medication (acyclovir) which I believe greatly reduced the severity of the outbreak. I'm not certain, but I think the sooner you start this medication, the more effective it will be.
I think the severity depends a lot on the person. I only missed two days of work when I had them only because they were right under my bra line and it tended to rub and hurt.
Then for a few months afterward I had what they call post herpetic neuralgia. Every so often I would feel a sharp pain through my ribcage.
I guess I was fortunate to have a pretty mild case of them or else maybe it was that I started the antiviral meds early enough to keep it in check.
I'd DEFINITELY see my doctor and get on some antiviral meds ASAP.
Good luck and I hope you feel better soon. Donna
Posts: 13 | From SW Florida | Registered: Jun 2006
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posted
I have had them twice within the past six years. Was prescribed Valtrex with the last bout. This last time the pain escalated to the point whgere percoset would not touch it. Doctor prescribed neurontin and it really worked very well!
Good luck!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
Thanks for all the replies and prayers. I was away for the weekend without internet access!
It is definitley shingles. It didn't start to look like shingles until 5 days into it. Too late for Valtrex. I had had itching and burning a week prior.
I had my appointment w/Dr. D. today. I saw his NP. She gave me Neurontin. I'll try it tonight.
The pain varies in severity. It is a burning pricking feeling on my skin & just below the surface. Sometimes it is dull and sometimes very sharp. It is in the same area where I had lots of swirling/vibrating/buzzing sensations over the last 2 years. Dr. D. says Lyme & Herpes Zoster can live side by side and I think they were roomates in my upper back!
I think if I didn't have Lyme this would seem really bad. However the poking isn't as deep as the Lyme poking was. It is not as debilitating as the really deep rib & shoulder pain (Lyme) I had for over a year.
It does get really bad at night though. There is no way to be comfortable since it is on my front & back. The last 2 nights I took Tylenol 3 (Codeine) before bed. That turned off the pain for 3 1/2 hours then I had to take another. That got me 7 hours sleep which is pretty good. Once I got out of bed (off the rash) the pain was manageable.
I usually take breaks throughout the day to lean back on the sofa. I can't do that now and I'm getting tired of sitting up straight or standing all day. Can't lean back though with the rash on my back. Any ideas?
I'm not scratching the blisters at all. The redness is decreasing. I'm going to soak in Epsom salts before bed. When the itching burning gets bad I tap the area around the rash and amazingly it controls the pain. I can't reach the rash on my back though so I'm doing my best to ignore all that goes on there.
It was really great finally having a few pain free weeks after almost 2 years of agony. Now this Oh well, I've made it through all the other pains Lyme has thrown my way and I'll make it through this too. Since the shingles started my Lyme symptoms have decreased. I'm wondering if this new problem activated my immune system.
Hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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posted
Oh, (((((hats)))))!!! I had a bad feeling about that when you described your rash last week. I was the bad person who brought up the idea of shingles and I'm so sorry you're out of the window for antiviral help.
When I had them I took Benadryl for the itching, but I got onto Zovirax about 3 days after the onset, so I was saved from the worst of it. Epsom salts sound like a great idea in the bath and I've heard Aveeno baths help some folks. I'll keep you in prayer - keep us posted.
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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posted
I just did a search on Neurontin and finished reading all the posts. My inclination right now is to not try it.
I'm mentally in a really good place (miraculously). Depression & suicide run in the family and Neurontin can trigger these.
My gut says it's too risky for me. I'll see how I feel tomorrow. I do really well with codeine. Very few side effects & I sleep well at night and stay functional.
Hi Hats and other shingle questioning folks... My name is Light and I have been with Lymenet on and off for about 7 years. I have been on treatment for Lyme for much of that time. I recently began experiencing tremendous pain (stabbing, burning, and also skin VERY sensivity) about a three weeks ago. A rash started about 2 weeks after the worst pain. The rash began on my left upper thigh and kind of ran toward my left groin area. Another rash appeared on my same hip and looked to connect to the first rash. A day later the rash was on my left side along the waist area.
I would share that I too had Lyme pain at this intensity during my toughest lyme bouts. So YES... Shingles is PAINFUL... but after the Lyme pain I have experienced, I would say it is a different KIND of pain ... but I would rate it in intensity with my worst Lyme pain.
I was relieved when I got the rash as there was something to "show" a doctor. I don't have a LLMD at the moment as we moved from Oregon to CA. I will be seeing Dr. S in the near future.
The rash helped to get the shingles dx of course. I was rx'ed Valtrex and Lyrica. After 2 1/2 days of tx I experienced a severe "seizure" which violent eyeball movement (terribly painful) and dizziness beyond description. The dizziness/vertigo continued over the next 10 days, lessening a bit each day. This was a terrifying experience, even though nothing much scares me anymore since I became ill with Lyme about 10 years ago.
I have had a dizziness with Lyme before, but NEVER to the point I couldn't walk for days on end. As I came out of the "seizure" I found myself physically trying to stop my eyes from flashing from side to side with my hands. The "seizure" lasted a full minute AFTER I "came to" enough to realize I was having one.
Because a side effect of dizziness can be from Valtrex, I stopped both that and Lyrica after three days of treatment.
I am saving for my appointment with Dr. S, but until then I would appreciate ANY information if anyone has experienced this type of severe "seizure."
I send hugs to you all,
Light
-------------------- love and hugs, Light Posts: 1 | From Oregon, California | Registered: Apr 2005
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posted
i once read a medical "blurb" that attributed a shingles(?) outbreak to flagyl. anyway, i recall the word "herpetic" or herpes being mentioned, but the article did not explicitly state which of the herpetic viruses "broke-out." verify statement though.
a year or so ago, another person posted something similar with the outbreak on the skin, but did not state what meds she was taking. when she mentioned the above similar statement on flagyl, or tinidazole, she subsequently posted that she was on one of 5-nitroimidazoles. teh person didn't repost to say if the rash diminished, or disappeared after stopping the this med.
a search should pull-up the thread on this.
if flagyl will do this, perhaps other members of the 5-nitro-imidazole abx might do so, as well.
The eyeball seizure thing sounds really scary. It is making me feel good about my decision to not take any new meds.
Today was a little better than yesterday. Last night I put some green clay on the blisters (the kind you mix with water & put on your face). Clay absorbs oil and it releived some pain and helped dry out the blisters. I used it 2 times today. I also soaked in a slightly warm Epsom Salt bath last night and this morning. I'll do it again before bed.
I read about eating foods high in Lysine and low and Arginine to control Herpes & Shingles. I've adjusted my diet accordingly.
Last night I took a Tylenol 3 and slept well. I'm pretty sure I got up and took another in the middle of the night. Can't really remember though (I wonder why)!
So I'm doing my best to ignore the pain and stay distracted. My head is relatively clear although the pain is tiring. I'm pretty sure the Neurontin would have made me fuzzy or dizzy. Right now I'm better off with a clear head. If the pain gets worse or becomes too tiring I'll start taking 1/2 tabs of Tylenol 3 during the day.
My Lyme symptoms are much better since the Shingles started. Glad there's a bit of good news in this mess.
Oh yeah, I've given up clothing and accordingly have not gone out much. Laundry should be easy this week
posted
My mother, who is 80, has shingles and is taking Lyrica and Percoset for the pain. This has gone on 3 months and she is better, but has to stay on the Lyrica til October. At first she had to wear loose clothing and go to bed for any kind of relief, but it has gradually gotten less. She still complains of burning.
She has read and been told that she cannot go near pregnant and nursing women, consequently has missed the baby shower and birth of her first great grandson. Please note this unfortunate "side effect."
She feels that she has gotten off easy compared to others, who have had this on their face and who have had to become virtually housebound.
Posts: 35 | From SE, MA | Registered: Mar 2005
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Carol B
Unregistered
posted
Hats- I must admit I was afraid to even open this thread for fear of getting shingles ! But this is you-my camera buddy! I have your picture,too. So I at least had to come say hi and I do hope this heals up without too much distress for you. Love, Carol
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posted
Janeymae, From what my Dr. told me & all I've read, it is only contagious until the blisters have crusted over.
Some sources say there would need to be direct contact with the blister fluid.
Fortunately mine have dried up. The clay really worked well.
Carol B. Thanks for checking in. I'm doing pretty well with the hand I've been dealt! Bluffing to the outside world so they won't know how sick I am.
I had a massage this morning, focused on lymph drainage. This helped a lot. I also found a way to prop myself up on pillows on the corner of the couch so there was nothing behind me touching the middle of my back. This hour of rest helped too.
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
I'm not a Dr. so please check this out with a Dr.
I have done Lidocaine patches on and off for the chest/ nerve pain that I have.
I mention this because someone once told me that Lidocaine patches are given to people who have shingles!
It might be worth checking out with your Dr. (LLMD or non LLMD). I find the patches really numb the skin; altho the pain relief does not usually go very deep which is where I need it.
I also found Neurontin messed up my brain and made me feel fuzzy and weird -- plus, no pain relief. Just my experience!
Feel better, hats. Thinking about you.
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Oh well, I've made it through all the other pains Lyme has thrown my way and I'll make it through this too. Since the shingles started my Lyme symptoms have decreased. I'm wondering if this new problem activated my immune system. ![[tsk]](graemlins/tsk.gif)
who brought up the idea of shingles and I'm so sorry you're out of the window for antiviral help.![[group hug]](graemlins/grouphug.gif)
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