posted
Since some of you have asked for my pain relief ideas I thought it might be helpful if I put it down here for you.
I have progressed from multiple IV's every week with narcotic pain meds to my present state of being free of any pain for many hours, even a whole day at a time. I am sure that the Bicillin shots are most helpful, but I have learned a few tricks that I can pass along. I have seen a wonderful pain doc for years and she is so happy with my progress from wheelchair to walking up stairs!
I still have neuro issues with speech, swallowing. trembling and cognition/memory. Writing is my best way to communicate. So I am happy to write to anyone who wants to PM me. I am in year 23 of my illness, but only 18 months since the lyme diagnosis and treatment.
Here are things that have worked for me (as well as for my husband's fibromyalgia):
Daily I take Ultram (100 mg) in the morning and another 100 mg late in the day if needed and another 100mg at bedtime. This is actually less than my pain doc prescribed. We also discovered that Ultram works better for me than the generic Tramadol.
At bedtime (or late afternoon) I take 15 or 30mg Amrix (muscle relaxer). It makes me sleepy if I take it AM. I also take 50mg Desipramine now and then...that works for nerve pain. I can take that during the day, too, if needed.
Leg pain often comes from swelling. A therapist showed my husband how to wrap my legs in wide elastic bandages from foot to groin. Then I often rest them atop a 20" therapy ball while lying fairly flat in bed. The wraps stay on all night. Usually it is only one leg and the swelling is not too significant...but the pain is!
Wearing a back brace when I am on my feet for awhile really helps prevent back and leg pain. Ditto a knee brace.
Wear sturdy walking shoes. I wear New Balance shoes and Merrell Encore. They help with balance and support for walking and help prevent falls.
I also wear an elastic glove when my hand(s) hurt. I wear extra soft and loose socks for cold and hurting feet.
I am a world class insomniac. They could not believe it until I was hospitalized for 6 weeks. So now I take 50mg extended release Seroquel (my doc said I could take much more if necessary) along with 30-60 mg Restoril which helps me fall asleep. My LLMD also added low dose Elavil. Getting sleep is a necessary component of pain control.
Also for pain:
Eye drops:Naphazoline Hydrochloride .1% (point one percent) (prescription Red Eye) It goes right into the brain and works instantly to dull the pain. One drop in each eye several times a day. I learned this trick from a very well known doctor. My husband and I both use these little miracles.
Voltaren Gel (prescription)...I use it on knee when I can afford it.
Lidocaine patches (prescription)
Fioricet for headaches. I also darken room.
Salon Pas (over the counter) patches
Heating pad...mine is always nearby
Cold washcloth on back of neck.
Warm soaking Epson salts bath
Lots of hot herbal tea. I use honey or Splenda,too.
Small "Miracle Balls" I found at Costco. They are about 5" turquoise inflatable balls. I put them under my back, neck and sometimes under my knees.
I use at least 4 down pillows in the bed...sometimes more. I try to get up and walk around as much as I can...I am often just too exhausted to do much of anything. I do try to do easy stretching exercises each day. I also move from bed to recliner. Too much time in bed often makes pain worse.
Magnesium oil...some folks think it helps them sleep. My doc recommended it, but I have yet to try it.
Calcium magnesium supplements and magnesium by itself as well.
I have also learned to use acupuncture needles. They help to relax me and are easy to use. I can put about 6 needles in my husband's legs, arms, head and his pain leaves and he nearly goes to sleep.
Learn how to do this from a reliable, experienced acupuncturist. If you are lucky enough to afford it, get professional treatments weekly. My son gave that to me for my Christmas present!
The main thing to remember about pain is to prevent it before it gets too bad and out of control. I have a terrible time remembering my meds and then the pain is really bad. My husband sees my face and asks me "Did you forget your meds?" and I admit I did.
I keep them in daily pill bins but even then I forget. I also keep my pain remedy reminders written out on cards clipped together. When I hurt, I get out the cards!
The other thing to remember is to rest. Don't overdo it one day because then you will pay for it for a week! Get up, do things for an hour or two, then rest awhile.
I am not a doctor and this is only a report of what I do after 25 years of dealing with significant pain. I strongly urge you to consult a pain specialist. Take along my ideas if you like. Everyone is different so what works for me may not work for you.
I hope this is helpful! Remember to laugh!
Farraday
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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