Mom in despair with Shingles pain. Any recommendations? All are needed and welcomed!
My mom is now 85 years old and has survived a severe case of cancer (2010), lives with serious bone decline issues (pain), lung problems and deep depression. She also broke her wrist at the beginning of this year and her hand did not recover its full functionality.
I had not logged in here in a long while just because I basically have had no time available as my caregiving life has become almost a 24 hours cycle. But what brings me here today is simply put, despair.
My heart is breaking seeing my mom, who has fought very hard in life with so many illnesses, literally broken with Shingles disease pain. The rash started showing last Friday but she started feeling the pain about two weeks prior. She is also experiencing a weird coming and going hearing loss since then. A day after the rash appeared a doctor came to see her and prescribed antibiotic, antivirals, antiviral cream and pain medication. I have been applying the cream every day, meds are taken but the pain is unbearable. Her blisters have opened (I guess part of the process) and they are raw is several areas. I struggle to take off the gauze every time because I pull and take her newly born skin with it. I use chamomile water to clean her wounds and to help me pull the gauze, it is terrible.
She was also diagnosed with bronchitis but assumed the antibiotic would take care of both illnesses, yet she stopped the antibiotic two days ago per dr indication. She still has low-mid grade fever, I am also afraid the Shingles is making the bronchitis secondary when it should not be,
Bare in mind my mom has a high tolerance to pain, super high tolerance. Yet this is breaking her, and when I read about Shingles my heart aches when I see it can last a long time.
This is not right, not fair.
We live overseas, so meds are likely the same as in the US but with different names. PLEASE if you have any suggestions take a moment to share them here. We are truly despaired.
I have even considered hospitalization, but now with the threat of COVID that may be counterproductive.
We believe in God, and know everything has a purpose. I am just trying to help my mom, who is so weakened with this illness. And finally, I am also concerned about myself, I have been experiencing dizziness when I move, if I lay down, get up or move my head to the sides, and I thought or think it is only tiredness, but it has been about a week now. So, I just feel this illness is breaking both of us.
again, any suggestions will be a blessing. Thank you in advance.
35 Answers
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I would call your Mom's doctor on Monday and explain that despite her high tolerance to pain this pain is breaking both of you; I would request hospitalization so she can receive stronger medication than will be allowed (I THINK) to you at home. With her fragility they will be hesitant to provide such things as fenanyl patches and so on, I would just guess, though they may.
Pain is the newest vital sign. It is taken very seriously. Call her practioner early on Monday, and do know that the ER is there; I hate to suggest going through there with Covid-19 on the rise. It's the last thing she can deal with now.
I am so very sorry. This is dreadful pain, and it is horrific to feel so hopeless and helpless to do anything about it. I hope you will update us.
I do feel for your mother; she's dealing with a combination of factors. Although this may seem lightweight, have you tried music for soothing and relaxation? It won't affect the conditions, but it may redirect her mind allowing her to relax more often.
I can guarantee that anxiety and nerves affect pain levels; when I'm experiencing that, I dream of gardening to help decrease the discomfort. When my sister was in the last stages of cancer, we listened to soft music, and therapeutic music, such as the lapping of waves on shore. It helped both of us fall asleep, something that became elusive as her cancer progressed. Maybe this would help your mother relax? And that in turn could make the pain and discomfort less prominent.
Do you have any pets? If not, you might even buy a child's toy pet. I found that helpful also when I was extremely stressed. A live, warm, furry and snuggling pet is even better. Cats and dogs are good therapy.
Some areas have animal therapy; perhaps you could check to see if there's one in your area? Or ask friends or neighbors if they'll bring their pets over, although the big caveat with that is the contact b/c of the pandemic.
As to the shingles, my only experience is when my father developed a case after having been hospitalized for 6 months, battling a combination of life threatening conditions. I don't recall for sure what kind of patches were applied, but I believe they were lidocaine. He was in rehab at that time and had outstanding care, the best I've seen anywhere.
If I recall correctly, one of the treating physicians also prescribed Buspar during the shingles period. I can't confirm whether or not it did help; my father was a strong person and didn't express his pain.
With your mother's bone decline (I'm assuming osteoporosis), do heating pads help? My sister introduced me to herbal heating pads, filled with scents of roses and geraniums. The heat is soothing; the herbs are calming. I don't know if this would help your mother's osteoporosis; it does help me though, as I use it on my back.
As to your dizziness, are you taking any BP medicine? Or Toprol XL? They can cause orthostatic hypotension and dizziness on rising. I think some calming therapy could also benefit you.
When my mother stayed with me, I played piano for her; we both relaxed, and felt much better afterward. Music really does have charms to soothe people.
I have no idea what the health care system in S. America is like, so I don't know what access you might have to other medical care, such as a different doctor. But I'm concerned about skin being pulled off as the dressings are changed on the Shingles area.
We did not cover my husband's shingles. I had him lie with no clothes on so that the blisters were exposed to the air. We used lidocaine spray and it worked wonderfully.
Use can use just tepid water and wet the old dressings before taking them off. That will make them easier and less painful when removed.
Barb’s suggestions are spot on; try to leave them open to air if possible, try a lidocaine or calamine spray . While they are draining I believe they are contagious, however, and need to be covered. Try a telfa dressing; they are designed not to stick to the serous drainage.
Ask her doctor to prescribe pain medication for her. Short term use won’t cause dependency and she needs something now. Tylenol will help a little.
Regarding the bronchitis mom is probably not breathing too deeply because of the pain. Was the antibiotic one that is given for 5 days (zpak?) I would ask the doctor how he plans to follow up on the bronchitis for resolution.
I hope those lesions heal quickly. They should begin to subside in 2 weeks or so. I’m so sorry for her.
I don't know anything about the medical side but, I love colloidal silver for any type of issue. It is natural and seems to help with so many different issues. I even read where a woman had eye herpes, which is viral, and using that multiple times daily actually healed it. (I just read about it and can't say true or false but, I can say the I use it for everything with great results.) Get the highest parts per million that you can and if you want to make it I would be happy to send you instructions.
Do you know if the pain meds are for nerves? My dad was prescribed lyrica and gabapentin when he had shingles and he said it made it bearable.
May The Lord God almighty bless your mom with deliverance from the pain, may HE lay HIS healing hand on both of you and lift you up from this despair.
Mark 16:18, ...they shall lay hands on the sick, and they shall recover.
Believe when you pray and she will get better, it is God's word. As a believer we know that ALL of HIS promises are for us and HE can not lie. I will be believing with you that The Lord will intervene and deliver her and you.
God bless and keep you both.
I was advised not to cover the rash - to leave it open to the air to decrease weeping, and cleanse simply with a clean wash cloth and tepid water twice daily. I asked for sleeping meds as the pain would not allow me to sleep. They helped me doze but I guarantee I did not get a good nights sleep during the whole 6 weeks I was bedridden. It took me a good 7 months to totally recover. Nothing has ever knocked my off my game like shingles. I sure hope your mom feels better soon.
Here's how we treated shingles when I was an active duty RN:
Please treat the shingles like Chicken Pox - because that is what it is. Calamine lotion will help the sores to dry and ease any itching. Do not cover the sores since they need to dry. If you need a bandage. put a non-adhesive pad closest to the skin, cover with gauze to absorb exudate, and wrap with rolled gauze. Try to avoid adhesive tape on skin. Consider putting mom on a schedule for her pain medication and any anti-itching medications as well. It is easier to manage discomfort if she has a steady medication level in her blood stream. Sometimes a cool compress (ice + water in a ziplock bag and wrapped in a towel) can ease discomfort. Cool "oatmeal" bathes can be soothing too, No hot water. You'll know you have turned the corner when she stops having fever and stops having new lesions.
Be careful since the lesions and her respiratory secretions/breath will have the chicken pox virus in them.
]My Gram had shingles and it affected the nerves in her hand. If your mom stops using a limb, notify the doctor. She will need physical therapy after she recovers.
I highly recommend a pain management doctor who will prescribe various types of pain meds that work for the damaged nerve pain your mom has. There are even pain block shot procedures that can be done. Your run of the mill family doc is not going to get in to all that, so you need a specialist.
As for you, you really need to see ENT doctor. It may be something as simple as allergies creating the dizziness. Could be sinus infection. Meds can help to dry it up. (You can try antihistamine from over the counter) However you need to rule out something more serious. And PS, go get your shingles shot. If you ever had chicken pox - the virus is already a sleeping giant inside your body along the spine. You can't catch shingles from mom, but doc told me if you've never had chicken pox you could catch that from her. (I don't remember what the contagious period is)
"Get the doctor on the phone immediately. Why was mom told to stop the antibiotic after 2 days if she has bronchitis?"
I would have concerns about this as well, for several reasons:
1) Shingles is caused by the varicella-zoster virus — the same virus that causes chickenpox. Once you've had CP, it remains dormant in your system and can come back as painful shingles, esp during stressful times. Antibiotics do NOT work on viruses. I see that there were also antivirals prescribed. The worst part is the pain - if the pain meds aren't working, perhaps she needs something a bit stronger?
2) Bronchitis can be either viral or bacterial. IF it is viral, the antibiotics *might* still be helpful to ward off any secondary bacterial infection. Being sick with both could compromise her system and lead to additional infections. IF it is bacterial, then why would the doc say stop? One thing we are always told is NOT to stop, as this is one way super-bacteria are produced.
IF she was having a reaction to the medication, then do stop, but there should be an alternative. My daughter had an ear infection at 9 mo. The antibiotic was NOT treating it and she ended up unable to hold down water and broke out in hives! Despite 5 days on medication, she had a SEVERE ear infection. When switched to another antibiotic, all was good. If there is allergic reaction, the primary reason for taking an antibiotic isn't likely to be treated. So, beware that too. Perhaps she would need another antibiotic?
I haven't had shingles myself, hopefully won't ever, but my mother did. From the Mayo Clinic:
"Treatment:
There's no cure for shingles, but prompt treatment with prescription antiviral drugs can speed healing and reduce your risk of complications. These medications include:
Acyclovir (Zovirax)
Famciclovir
Valacyclovir (Valtrex)
Shingles can cause severe pain, so your doctor also may prescribe:
Capsaicin topical patch (Qutenza)
Anticonvulsants, such as gabapentin (Neurontin)
Tricyclic antidepressants, such as amitriptyline
Numbing agents, such as lidocaine, delivered via a cream, gel, spray or skin
patch
Medications that contain narcotics, such as codeine
An injection including corticosteroids and local anesthetics
Shingles generally lasts between two and six weeks. Most people get shingles only once, but it is possible to get it two or more times."
As you noted, the names may be different where you are located, but the doctors should know how to figure it out.
The last part is included as warning - this could take some time to resolve. Many sympathies to your poor mother! Hopefully she will be in the two week group, not the 6 week one!
My wife had them twice within a 12 month period. The first episode lasted for several months. The second was shorter and less severe. The Capsaicin topical patch and cream was helpful for the pain both times.
Get a cut? Spray colloidal silver on it. Got a sunburn? Spray! Face breaking out? Spray! Eyes feel tired? Yep! So, so so many great uses.
As for your problem, it sounds like you have vertigo. Out of the blue like this the most common cause is either labyrinthitis or benign paroxysmal positional vertigo. The labyrinth is the gyroscope system in your inner ear that tells you which way is up and which direction you’ve turned in. Labyrinthitis (or vestibular neuronitis) is thought to possibly be caused by a virus but no one is really certain of the cause. Inflammation of the inner ear causing over stimulation. If there is nausea and/or vomiting associated with it this is probably the cause. BPPV is caused by over stimulation of the hair cells within the labyrinth usually by what is basically a bit of grit in the system which has fallen down into the area where the hair cells area and so overstimulates them on slight movement. Sometimes also causes nausea. There are medications you can take that will help with the vertigo and the nausea if they are severe. Labyrinthitis will usually settle of its own accord over a few weeks. BPPV might need treatment like the Epley manoeuvre which you can find on the internet. Cawthorne-Cooksie exercises are also useful. But if you are having any hearing loss or ringing in your ears you need to see the doc as it could be Ménière’s disease.
I hope this might have added to your information a bit. Good luck. My prayers are with you. I DO believe in God but I don’t think God causes these things for a reason usually. I think they just happen because we live in an imperfect world and this is a part of that. It doesn’t stop us from praying for resolution and relief.
It does last awhile. The upside for my husband is that I had been begging him for years to see a doctor for checkups. Nope, he never made the time to go.
At a follow up visit after his shingles the doctor saw something suspicious on his lab work. She sent him to a specialist and a biopsy was taken. He has cancer and being treated.
So in my husband’s case, I am glad that he got shingles. I hope your mom can find relief soon. It takes awhile for the pain to subside.
My husband caught his early so it isn’t going to be as bad as someone who went to the doctor at a later point in time.
I would continue to speak up on your mom’s behalf. I feel so badly for her.
Will keep her in my thoughts and prayers.
My 96 yr old Dad had a break out all over his body except his legs and we went thru all. Creams and ointments and meds as his made him itch where he wojld itch so bad 24 7 and cry out in pain because of the itching..
anyway it just wouldn't go away. It would start getting better than reverse and get bad again. The Dr finally decided he must be allergic to something..
anyway I prayed and prayed to take this misery from my Dad and finally I was impressed to use Pure Virgin Coconut Oil on him and after a couple days you could actually see the inflamation going down and it just got better and better and finally went away after a few weeks.. I continue with applying the virg8n coconut oil on him every day.
In regards to your dizziness, I had the same experience really bad just 6 weeks ago and was in bed a week just getting out to go to the bathroom and I was so dizzy, I used a walker to make sure I wouldn't fall.
After a week, I finally went to the Dr and I did have a little bit of an infection but I was Low in Iron and Sodium and I was told to drink more water and take a multiple vitamin with iron as I'm not on any meds or vitamins except I was taking one Airborne every day.
It took about a month and my dizziness is almost all gone.
But since it's not 100% gone, I think I am going to ask my Dr for a Referral to go see an Ears Nose and Throat Specialist, just to make sure my ears aren't part of the problem.
Praters
Good Luck with your Mother
I understand it is critical to get on an antiviral asap when shingles is diagnosed. This is hoped to curtail the outbreak. It is by no means a cure, I am sorry to say.
My research tells me her sporadic hearing loss is related to the shingles.
Gabapentin seemed to briefly help my mom tho it also affected her cognition, significantly at first. Then it seemed not to work. She does see a pain specialist. He switched her to Lyrica (generic is pregabalin). It helped. (Started on 50 mg 2x a day) now on 25mg 2x. It also affects cognition and I think her motor skills. But not bad.) She also uses 5% lidocaine patches daily. We are 6 months out with this.
I agree—call doc immediately to ensure she got antivirals. (They must be given wi 72 hours of outbreak.) Also get a pain doc who knows about shingles to try something for pain. Hydrocodone did not touch the pain for my mom.
Shingles is a cruel cruel condition, so bad and potentially debilitating that the vaccine should be given to everyone at risk, which is all of us who have had chicken pox.
Be aggressive with the doctors in getting her pain relief as I think longterm nerve pain correlates to uncontrolled pain. (Not sure but based on pain doc comments, this was my impression.)
Blood pressure: monitor her bp with at home monitor. My mom’s went high and tho not on bp meds bf shingles, she’s now on 3. There is a significant increased risk of heart attack and stroke in the first 6 mos after shingles. I think the pain causes the high bp and if not treated, can result in a heart attack or stroke.
During my mom’s initial recovery after blisters healed, we microwaved a damp cloth and applied it to her neck (outbreak area.) This helped. But be careful not to do this if you are applying any topical treatment.
Tho my mom still has pain, it is manageable and she is light years improved from what she was like in April. I wish you both hope and a full recovery.
As to the dizziness, I'm not a doctor but it sounds like it might be benign positional vertigo. Try the Epley maneuver. You should be able to find good instructions easily with a web search. If that doesn't work, please see your doctor!
I’ve just talked through with DH exactly what we did with him. He showered twice a day or more if he wanted, then did a very careful pat dry over the blisters. I used a cotton bud to wipe off any matter from broken blisters. I then dabbed old fashioned pink calomine lotion on them and left it to dry. He wore his softest shirt, and tried to keep working (he was about 65) to take his mind off it. He says that relaxing is easy to say and hard to do, but it helps to shorten the attack.
I’d up the pain medication, even if it makes her dozy and ‘out of it’. It’s just a case of getting through this.
The net says ‘Calamine is a mixture of zinc oxide and other components. Calamine and zinc oxide are topical anti- itch lotions. Although the exact mechanism of how calamine and zinc oxide work is not known, they have skin protecting and astringent properties that relieve itching’. I would be surprised if you can't find it locally.
DH says the gauze taking off the skin is NOT the way to go. If you really need to put a cover on them, look for some of the new sticking plasters designed for open wounds. He says he thinks that they have a non-sticking plastic surface next to the wound.
You both have very sincere sympathy from both of us. Please reassure your mother that the attack WILL finish. Yours, Margaret and Tony
For you, Rosses003, I would urge you to be seen by your ENT physician as you COULD have an inner ear problem. I recently had tremendous, room-spinning vertigo that was actually caused by my physician digging far too deep into my surgically altered ear.
I had not even been able to read your answers as I have been completely focused and dedicated to take care of my poor mom, with very little success as far as her pain management.
As I mentioned before she started taking medication a day after the rash appeared. The meds included Acyclovir, pills and cream, an antibiotic and pain meds which included Neurotin 150mg and Novalgina 500mg. None of the pain medication works for my mom. Most meds were prescribed for 5 days only, and I did ask the doctor if I should indeed stop them after five days since my mom still has the blisters (they are healing but still there) and the doctor said to stop the medications after the fifth day as she had originally indicated. I am concerned as I see my mom still very ill, yet stopped the meds, except for the useless pain meds and the Acyclovir cream which I apply twice a day on her wounds which are located on her back and front, left side of her body.
My mom is completely broken by this pain. Today in the morning I tried putting an electric massager on her back, around the affected area to “distract” the pain, but did not work. I have stayed away from cold compresses because they may not help her bronchitis. Have been giving her Medication to help her sleep too but the pain is too much.
Also, I think I associate the hearing loss to the bronchitis, although I am aware it can be the Shingle. Every time she gets congested her voice pitch changes and she loses her hearing. It is very bizarre. And ENT came a week ago and saw no blockage in either ear.
Shingles is indeed a very cruel illness. Cruel to experience it and cruel for a daughter to watch a parent suffering because of it. It is amazing how my mom has gone through cancer, herceptin, chemo, radiotherapy and all the side effects that come with those devastating treatments and which are affecting her to this day (since 2010) and yet Shingles is proving to be much more debilitating for her...and for me.
I relate my dizziness to tiredness because of severe lack of sleep. First because I am almost 24 on duty (my mom would not like having a nurse) and second because when I get to try to sleep my subconscious keeps me awake reminding me I need to be alert. It is very strange and very tiring. Yet if I don’t get better I will go see a doctor.
I have a question because I do have Lysine in the house, but does it help with the itchiness or will it ease the pain? She amazingly has very little itching, it is all about the unbearable pain.
I will re-read all your answers to see what I can add or change from what I am doing with her, contact the doctor about, etc. I honestly pray that we can get over this very challenging time soon.
Thank you so very much again, to all and each of you.
Because it is so contagious, I stocked up on gloves, lysol spray and disinfectant wipes. The wipes were used on the toilet and we carried them in a baggie in his pocket when we were at familys homes just in case he had to use their bathroom. The tub was disinfected every time he used it and his favorite chair was sprayed down nightly with lysol. Even the seat in my car was disinfected after he was in it. I pray he NEVER gets them again. He could tell me every time a blister came up. Said it was like having a burning nail pushed out of his skin. We checked on the shots but here, they are $500 each. We are both in our 70's and really need them.
The best of luck to you and your mom. They really are bad. I pray she gets some relief.
The itching was what got to me. I called my SIL who is a Dr. and he said I should be on Gabapentin, and my PCP called some in. That helped the most. I did also use a spray that they put on horses with tick bites--it stung but worked for a short time. I think I also took Benadryl for a few days.
The secret, sadly, is that you catch it early--which I did. I still had blisters for 6 weeks, but I was not truly miserable.
With our elders, we need to be checking them for blisters or rashes on the torso, where shingles often first occurs. My mother's breasts hang to her knees, so her shingles were not noticed for 3 months. She never looked at herself. B/C of that, I check myself daily.
I should have fought my other PCP about the shingles vaccination. She kept saying "wait until you are 65'--well, I was 63 when I got shingles and it is not unusual to break out in those after a bout of chemo.
I am in consistent communication with her doctor, every day. Hence we ended up applying morphine yesterday. In my update I mentioned all she prescribed and basically she just says the pain due to Shingles is unbearable. She does not recommend hospitalization, she says it would be too risky for her as COVID is still a great concern here and she has a weakened immune system. Hence I am trying to do all I can from home. It is a horrible, horrible situation to be in. I just pray the relief she got yesterday lasts a while and the pain becomes more manageable.