Quick 12 week update. Pats PCP did begin imaging study yesterday with X-rays of shoulder and hand (as suggested by hope4cure and Merry), also blood test to rule out clot as possibility for swelling. All of which showed no problems, they also started her on and antibiotic to rule out any bacterial infection. Follow up appointment this coming week to decide on next process going forward. Both NP and doctor involved felt sure that present hand/shoulder problem were not associated with PHN and approved slow taper down of Gabapentin but did prescribe more pain control as needed to get through this process. We’ll see how it goes and if any connection is found to be related to original shingles phase or PHN going forward I’ll return with an updated.
Don
Hi Don and Pat!
Is Pat's shoulder feeling more arthritic than burning, ie like Shingles pain? That would actually be a good thing, as it would be easier to treat. The thumb swelling and pain certainly has me concerned. Is the thumb very red, swollen, and throbbing?
It is amazing how much a tiny bit of appendage on the body can cause so much pain, isn't it? I often thought of that regarding my right ear...as I would writhe silently in pain. At least they are taking Pat's complaints seriously.
My best wishes to you and Pat as we approach spring.
Merry Juliana
Hi Merry,
Sorry for late reply but been tired up all day. Pat’s shoulder pain is more like what (we would think) arthritic pain might be like. A constant lower level pain deep in shoulder (Glenoid cavity) area extending up towards (Acrormin), which increases with usage and sometimes has sharp shooting pain thru that area with certain movements which at times can even be felt in back (Acromial angle) or (Scapular spine) area. I had to look up all those medical terms for description. She does have minimal burning pain, ie like Shingles/PHN pain on outer area of upper arm but it is tolerable where the shoulder pain is not.
All fingers are swollen but thumb is worst. We would not consider the thumb as “very” red even though there is a couple spots that slightly redder than rest. It does not throb, but feels tight and painful, more so when touched. She cannot curl any of her fingers, only wiggle them. She can barely make her thumb and forefinger touch can’t even hold small piece of paper between them. The swollen skin of fingers/hand have a shinny appearance and strangely enough the fingers slightly stick together like if you had pancake syrup on them even thought clean.
Doctor did feel for swollen lymph nodes in arm pit area, but didn’t find any.
Thanks for your continuing concern and support.
Pat and Don
More info, Merry
Follow-up appoint PCP confirmed no bacterial infection, no sign of bursitis, arthritis, bone spurs found in shoulder or visual sign of fluid there or hand (IIRC). They believe it to be rare “Complex regional pain syndrome” short wikipedia description “a disorder of a portion of the body, usually the arms or legs, which manifests as pain, swelling, limited range of motion, and changes to the skin and bones”. They recommended physical therapy which sounds like it will also include compression therapy as you suggested earlier.
Pat and I are not sure but she is willing to try the therapy. What puzzles her is when she lowers (lower arm) so that hand is level or lower than elbow, hand turns red or blue tone until it is raised again above elbow.
Don
Don,
My suggestion is that she consult with a sophisticated pain center and have more tests done. She should be seen by a team of neurologist, physiatrist-physical rehabilitation), specialist, and pain specialist. They can perform nerve conduction studies and electromyography, blood studies to see what is really going on. Complex Regional Dystrophy Syndrome is a diagnosis of EXCLUSION. Perhaps that is the only diagnosis, but it's really complicated with Pat. The Herpes Zoster-Shingles and lymph node excision certainly precipitated this, and at least for her arm and any where the pain and or rash initially was, Post Herpetic Neuralgia can be agonizing.
She can be placed on a better cocktail of medications for the pain. I am not saying she doesn't need therapy for the arm, BTW. I feel she needs a thorough work up, however. I would do this if this were me, BTW.
(I have had to be my own advocate to get help for severe spondylolisthesis grade IV and slipped discs. I needed surgery in my neck and my lumber spine and was walking with a walker before anyone would operate on me. The surgeries were both successful, BTW.)
I shall be thinking of you both.
Fondly,
Merry Juliana
Merry,
You are amazing. I learned a lot just reading your comments.
I have rheumatoid arthritis, and it's never a dull moment. I started having pain under the arm and in the shouler. Then it started traveling down the arm. My pinky and ring finger started getting numb. Knowing I have herniated discs in the neck, I thought it was a pinched nerve, so I made an appointment to see the ortho. In the meantime I wound up with 3 pink welts that looked more like hives. I started a new med, so I thought it could be an allergic reaction. I saw primary care. They thought it was an allergic reaction as well. Then it just started to erupt all over the arm. It went across my upper back. Saw rheumy and my DO and they thought it appeared viral, but didn't fit the shingle typical pattern. My hand swelled up to the point it's hard to close. They found a dermatologist to get me in right away. He did 3 biopsies, which I'm still waiting for results. Couldn't say for sure what it is, but says he believes it's disseminating shingles. Even though it's way past 72 hours, I'm taking valacyclovir. I had to ask for gabapentin today, because the nerve pain is preventing me from sleeping. I'm still getting chickenpox looking spots on thighs. Nothing ever really broke open or "scabbed' which is strange. Just have very dark spots now.
I was never itchy. The bummer is I finally was able to walk after 2 years of tendonitis in the feet. Last year the posterior tibial tendon ruptured from the ra. They transferred a tendon and sliced the heel bone and moved it over. Took a year to recover. Then BAM....shingles! Fun.
I can't wait for the non-live virus vaccine, in hopes others with compromised immune systems, don't have to go through this.
You seem to be a great help and lots of support for people. I have to say thank you for that!
Jamie,
I am so sorry you are going through this. I am concerned if it is disseminated that you should be admitted to the hospital on IV Antivirals. Your judgement can be really poor when you are so sick.
I know my clinical judgement regarding myself has been poor when I am very ill.
Is Gabapentin helping the pain? I know RA and herniated discs, plus shingles can all be excruciating, but sometimes you need a cocktail of analgesics. You have probably read my suggestions regarding analgesics and pain control. If you are in agony, you can be admitted to the hospital for pain, BTW. If you are on biologics, I don't doubt the disseminated Herpes Zoster-Shingles. Well, I don't doubt it anyway, with your RA.
Physicians tend to disbelieve my recurrent Herpes Zoster-Shingles every three weeks and marginalized my identical twin's SLE, RA, & Sjogrens, until the blood work came out positive.
Please let me know how I can help you.
Best Wishes
Merry Juliana
Thank you so much, Merry!
I really appreciate your feedback.
My heart goes out to you and your family.
I'm actually a twin - not identical. I often wonder how much being a premie has impacted my immune system.
I'm still waiting for the biopsies. The rash is clearing up, but the pain isn't easing up yet. I only had 2 gabapentin so far.
This stuff, on top of dealing with the ra, wears me out. :\
The dermatologist did mention if it looked like things weren't getting better, I would need an IV.
I wish you all the best, and am very grateful for your help!
Big hug to you
Jamie
Geeze! Just saw blood tests I had before I started the valacyclovir. The creatinine is 1.26 and gfr is 48. I know the antiviral is bad on kidneys. I started a medrol pack when I thought it was a pinched nerve. I wonder if that messed with kidney values. I'm concerned with taking this antiviral, especially since I started way after the 72 hours. I reached out to all my docs. Need to stay on top of everything!
Dear Jamie,
A Medrol pack or short term seven day dose of Valcyclovir should not cause irreparable harm to your kidneys. I would not do maintenance therapy with Valcyclovir, however.
People taking daily NSAIDS do more harm to their kidney function, cause peptic ulcer disease and hypertension. You are right to be concerned regarding your kidney function and should be seeing a nephrologist, ASAP. I am in Stage 3 Kidney Disease.
Merry Juliana
Sorry to hear that Merry.
My DO and rheumy watch my liver and kidney values all the time. They are all over the place depending on the medications.
Geeze, this nerve pain is terrible. It seems to be worse at night. Gabapentin isn't helping yet. Norco doesn't do anything either. I get the biopsies stitches out tomorrow, so I'm going to see what the dermatologist can give me to help. Still didn't get the biopsy results.
I hope you feel better. I can't imagine going through this as often as you do. I really appreciate your help. I'm sure others do as well.
Have a wonderful day!
Jamie
Jamie,
Norco isn't worth taking. Try Oxycodone 10mg every 4 hours.
Also, Lidocaine Cream topically.
Merry Juliana
Thank you once again!
I just saw dermatologist and asked for something for pain. Since my DO gave me the gabapentin he wants them to manage it (?? geeze).
I know the gabapentin takes a while to get in the system. I'm going in if it ease up soon. Sad thing is I'm used to pain.
I hope you are feeling well!
I really appreciate your feedback.
Jamie,
I'm sorry. It sounds as if the dermatologist doesn't wish to be bothered. Most physicians these days don't even care if their patients are in pain.
Being used to the pain doesn't mean you function well with the pain, however.
I know agonizing pain (and itching) very well, unfortunately.
Best Wishes
Merry Juliana
Jamie,
I have some choice words for your dermatologist, BTW.
Merry Juliana
"I know the gabapentin takes a while to get in the system. I'm going in if it ease up soon. Sad thing is I'm used to pain."
Jamie, sorry about what you’re going through. My wife (subject of this thread) took 1800mg daily of gabapentin for over a month, with no pain relief at all. She is still suffering with pain (now in 7th month) from PHN of arm/hand diagnosed by neurologist she’s been seeing for couple of months now.
She only started getting some relief when he prescribed oxycodone-acetaminophen 10-325mg ever 6 hrs as needed. Exactly as Merry suggested to you and very early is this thread for my wife. We’ve found her to be right on target from the beginning.
It broke my heart reading what your wife is going through. Merry truly is a blessing. I learned a lot in these threads. I also have it my right hand and arm. It's horrible.
I'm going to make an appointment with my DO. The system is screwed up when people that need help with pain can't get it because of government bs and people that abuse the meds. I deal with ra pain everyday, but the nerve pain is a lot different. I don't want to wind up with permanent damage.
I wish your wife all the best. She's very lucky to have you. We are lucky to have Merry.
Have a good night!
Jamie,
Were you able to see DO and get some help with pain relief? You’re right on target about government bs and abuse by some of meds, a point Merry has made in other ways in the past.
Thanks for well wishes for my wife. We wish you the best also, both with this and your arthritis.
Don
Dear Don,
I was thinking about you and your wife as I was going through another bout of Herpes Zoster-Shingles. My wonderful husband and son were caring for me, not much to do, but cooking and cleaning, LOL, but you know what I mean! I thought of how you cared for your wife through it all, and researched options.
How is she doing, currently?
Are you and Pat going to get Shingrex?
I will, once it becomes available in Delaware..
All my best to the both of you!
Merry Juliana
Dear Jamie,
I am playing catch-up. I have had two shingles episodes, pretty much back to back. How are you doing, now? I know the RA pain and dysfunction never completely resolves...my mother had it, and my identical twin has it along with SLE.
I hope the worst of Shingles is over for you. Please let me know if there is anything I can do.
Best regards.
Merry Juliana