Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Just HAD to share. . .
I’ve been having a few setbacks in the past couple of months. I.C.Bladder pain, herniated disks pain, rib pain, shoulder blade pain, gallbladder cyst pain and migraine pain. Plus most other Lyme symptoms in the background. (sweats, inflammation, stabbing pains, brain fog).
Last week I called my pain management office and requested a telihealth appointment due to current physical conditions.. The receptionist told me they offered telihealth during covid but now want to see patients in person. So I made the appointment for Monday. (50/50 chance of me showing up)
I just got a call from my pain doctor. I said “Oh my God, please don’t tell me today was Monday and I missed my appointment?”
She said no, today is Sunday and I’m home doing laundry, lol. She asked me what was going on with my health. I explained everything, new testing, new doctors, new symptoms. We did a telihealth appointment on a Sunday folks!!!!!
THIS doctor cares about her patients 💕💕💕💕
Previous appointments have been extraordinary too.
When I check in, they escort me to a patient room. Doctor knocks on door, asks me if I would let 2 or 3 residents sit in on my appointment. I always say yes. Then Doc says, Bonnie, without telling them your diagnoses, can you explain your symptoms to them?
Only one time a resident has rightly guessed late stage Lyme disease. She was from Maine and said EVERYONE in Maine either has Lyme, or a family member has Lyme or knows someone with Lyme.
Also, during the height of covid, to protect her patients, she purchased ultraviolet lights in each patient room. Only she was allowed to operate them. 2 minutes on with the door closed and the room was completely sanitized.
Masks are STILL required. Her patients are very ill, late stage diagnoses, cancer, etc.
When I got off the phone, my mind was blown away. This has never happened to me, ever. I was so happy, my faith in humanity restored!
There ARE some really great doctors out there. My Guardian Angel sent this one to me 💚 I am so blessed!
Posts: 3075 | From Florida | Registered: Nov 2016
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posted
So wonderful that you found someone who cares, and knows what you need to get pain relief.
I was blessed with a great pain specialist in another state many years ago. He saved my life, when pain was so bad it become a medical issue.
It was rare before to find a caring and effective pain specialist. It must be even more of a challenge in today's atmosphere.
Posts: 559 | From New Mexico, USA | Registered: May 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Wow, how extraordinary!! I'm so glad for you.
Is she able to rx meds for you that are adequate for the pain??
I ask, because the DEA has made doctors afraid to rx low-level opioids for patients who really need them. None of the doctors in any of the hospital systems are allowed to rx ANY opioids for anyone for any reason! And those systems have bought up most of the independents doctors' practices.
I have been wrestling with this for a very long time. It makes me despair of getting pain control to make my life livable.
Posts: 3792 | From around | Registered: Mar 2008
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Very sad the CDC! DEA and DOJ decided to experiment by eliminating pain meds to EVERYONE in order to address the drug overdose epidemic.
They have since revised their guidelines due to patient injuries by not tapering off doses and ignoring patients chronic pain disorders.
There is a group that is fighting back. It’s called the Doctor Patient Forum. Please check it out.
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Update
My Pain Management Doctor Hero Angel has retired. I am devastated, crying.
She gave me a 2 month notice. She did not know anyone in the area to refer me to.
I gave her a retirement card and wrote how thankful I was for her understanding and treatment of my pain, which kept me in the workforce to provide for my family and also built a little net egg ( all gone now due to Lyme). She was instrumental in my disability case along with all my other providers, but the judge specifically referenced her. Her reputation stellar.
I am so THANKFUL for her mentoring so many students so her legacy of compassion will continue on. ♥️
Side note Her husband, also a doctor, was on a mission to buy an MRI machine for a small village in India. He completed his mission and personally flew to India to deliver the check. These are quality human beings folks!
So I did what I normally do and grabbed the bull by the horns and set out to find new pain management.
Every Pain Management clinic I called booked me an appointment and then uttered “ By the way, the doctor does not use opiates, is that ok?”
I said “Wait. . . What?. . . .The Doctor is a pain Management specialist, has late stage cancer patients and chronic pain patients and doesn’t utilize opioids in his arsenal to treat his patients? No, that is not ok and he is failing his patients. This is a life-changing health issue for so many people!”
Today I will be making more phone calls, writing more letters to my state representatives and senators and praying for spiritual help. 🌟
Posts: 3075 | From Florida | Registered: Nov 2016
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
BB so glad you had your pain management doc when you did. My GP also doesn't RX pain meds so might have to change when I get Medicare next January.
I've had stockpiles of pain meds from before but will run out this year. Due to MCAD I can't tolerate them for long and have to cut them in quarters.
My Mom who had cancer had issues getting her pain meds through the military base pharmacy. Ridiculous!
This so called war on drugs has caused so much suffering.
I hope you find a compassionate pain doc.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6525 | From Columbus, GA | Registered: Jul 2004
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
I have a very good pain doctor. Just got him a couple of months ago. He knows i will push myself to keep in shape,and do not want to get hooked on anything. But sometimes I need to use pain killers.
MADDOG
Posts: 4041 | From Ohio | Registered: Oct 2000
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Some alternative ways of managing pain can be helpful, but sometime prescriptions are needed.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 9440 | From Illinois | Registered: Aug 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
BB, I had forgotten about this post . . my memory is shot between Lyme and Lyrica, which I hate, but can't do without unless I could get more opiates (still would be low-level).
Have you found anyone else? Those are big shoes to fill. I wish I could get more, so I could go off the Lyrica/Pregabalin, but I doubt that will ever be possible.
Luckily, I have been going to my migraine neurologist's practice for decades, and I can get some Percocet there. And, yes, as someone said, I cut them up into quarters and take the least that I can. But without it . . forget about it.
I pray that you can find someone to help.
Posts: 3792 | From around | Registered: Mar 2008
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Update
My pain doctor gave all her patients a list of pain management practices in the area, total of 12 practices. She gave patients an additional 2 months to transfer, so 4 months total until she retires.
I used this invaluable tool while researching each doctor on the list;
Most on the list stated they provide ‘Interventional Pain Management’ which is basically injections, epidurals, ect, ONLY.
Some were physical therapy and sports medicine but not prescribing practices, even though their prescribing history stated other wise.
A few were impossible to get in touch with due to not answering the phone or returning messages.
I decided on a pain management clinic through my Neurologist’s Center. My 1st appointment I sat in the waiting room and witnessed 3 patients screaming at office staff for not calling in their scripts nor answering their phones. I decided I could not deal with this drama due to the lack of care of patients.
I found a new practice of 2 NP’s that were not on the list but they were waiting on their Medicare license estimated 60 days approval.
They have canceled my 1st appointment twice, still awaiting on their license. It’s been a 4 month wait so far. And I have no idea of HOW they treat their patient’s pain issues.
When my retired pain management doctor got notified through her office staff of the hardships her patients were experiencing, she decided to continue working for one day a week until ALL her patients had access to care.
She stated “ I will not abandon any of my patients.”
This woman is GOLD!
So I’m still receiving care every 2 months with her and hopefully I will finally become a new patient in the new practice soon.
The struggle is real and inexcusable!
Posts: 3075 | From Florida | Registered: Nov 2016
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I know it's to much to hope that things would change in regards to pain medication. Like I said I'm hoarding mine and cut them into quarters which thank God works for me.
I know this is going to sound woo woo but I've been doing Earthing for about a week. I have many musculoskeletal issues and I've noticed my Morton's Neuroma and Plantar Fasciitis on my left foot is getting better.
I sit outside and put my bare feet on the ground for 30-60 minutes and shoot for every day. The first couple of days I felt sick but by the third day I noticed I have less pain. Even my bad left shoulder feels better.
It's free and might lessen pain for you guys too. It's supposed to help with inflammation.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6525 | From Columbus, GA | Registered: Jul 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Wow, bb, I am not surprised about the difficulty of finding a good pain management doctor, sadly. Thank God that your doctor is hanging in there until everyone gets into a good PM doctor. Wow, she IS gold! If only she could be cloned---or if someone would be mentored by her for a while.
I am limping along with what I have, which I'm lucky to have through my migraine neurologist;s office. When I go on Medicare soon, I will have to pay out of pocket for med management visits since they don't take Medicare.
I really want to take a larger dose (still low level) and ditch the Lyrica, as the side-effects for me are atrocious! And my pain is constatntly spiking, because nothing lasts long.
I have one other doctor to try for pain meds, who knows me for decades. I don't know if he can rx what I would like to try. He's out of network and Medicare and fabulously expensive. Not sure if I should try him for that.
Another doctor I was hoping to get an rx from has just retired, And he said that the med I wanted wouldn't help me more than what I'm doing. Plus, he said NO ONE can rx opioids much, because the DEA comes down on them hard! It happened to him. I think it costs the doctors a lot in lawyers to deal with it.
I also might eventually need a spinal cord stimulator, but that wouldn't affect the large areas that are in severe pain, more than 1/2 of my body and up into my organs. Plus, the problems that people often get scares me. Some people end up with MORE pain from the two (or more) surgeries for it!!
Posts: 3792 | From around | Registered: Mar 2008
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Rumigirl Spinal cord stimulator is a tough decision for sure.
Ask each one of your providers for a pain management referral. There are a few good ones out there but hard to find.
What I didn’t like about the process is that you have to send your records to the new pain clinics and then THEY decide if they will take you as a new patient. My records are in the hands of 6 different providers now!
Also it’s pool season and I have NO pain when in the pool.
Yes, my pain doc mentor’s residents. She asks first if I will allow them to sit in my appointment. I always say yes. We go over all my pain issues, which involve every inch of terrain and organs in my body.
Then she asks the residents “Guess Bonnie’s diagnosis.” Only one out of maybe 20 residents guessed Lyme disease. She was from Maine and said everyone in Maine has a neighbor, family member or have Lyme Disease themselves.
Doctor always lets me advocate for Lyme disease to her residents and they always receive pamphlets from me!
akinwlf- so glad you’re having a positive experience with grounding. Gotta help mentally too. Does it work if you lay on a sprayed tick repellent blanket?
Posts: 3075 | From Florida | Registered: Nov 2016
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
bb,
I am in awe of the wonderful links that you have above and on the other post that you linked! Thank you, thank you, thank you!!
I'm still shocked that I didn't remember about these posts, which I had read and posted to before. On top of the Lyme, the Lyrica has destroyed my brain!! I can't remember anything. I want to get off of it, but haven't had enough other meds to do so.
Last night I used the links to look up about the doctor who once gave me an rx for pain meds when I had a bad fall and spread the CRPS to my hands. But according to the lookup for their prescribing habits that you list, he hasn't prescribed much, and only Tramadol, which never helped me.
Then I looked up my migraine neurologist: he has a big practice with 2 other doctors and 2 NPs. He's prescribed a TON of pain meds of all varieties!! So that answered my question. I will continue to get my pain meds there and will see how I can alter it so maybe, maybe, maybe I could ditch the blasted Lyrica.
It's a private practice and not connected with a hospital system, so they are more able to rx pain meds. And I've been there since 2001! But I know that since the DEA clamped down, it is more difficult. But he does what he can and is empathetic with patients. He used to have migraines himself.
To be continued . . . I can't thank you enough for your dedicated support for all of us. Especially since some of the old timers have passed on, we need all of the help we can get.
I pray that you find the right doctor to replace your golden doctor. It shouldn't be this hard!! It's not patients like us that caused the opioid crisis. But we all know this. Sigh.
Oh, and the spinal cord stimulator . . that would be a last resort; I really don't want to go there. There are too many bad possibilities with two or more surgeries!! Plus, I need to go back on treatment and stay on it for a long, long time.
Posts: 3792 | From around | Registered: Mar 2008
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
BB I'm not sure about the blanket but what I'd try is a natural fiber like cotton or wool and spray the side that comes in contact with the ground and not your body.
I'm new to Earthing so am trying to figure things out as I go along.
Pain is part of my life (hit by a truck while on my mountain bike in 2001) and have been on pain meds for years.
Since diagnosed with MCAS in 2016 I've had to basically take as little as possible which sucks.
So this Earthing thing is a big surprise and I'll keep it up since it seems to help and I haven't experienced any more side effects.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6525 | From Columbus, GA | Registered: Jul 2004
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posted
AK and Bonnie--earthing only works if the body is in contact with the ground unless you have special earthing shoes with copper in them or a grounding mat that you can plug in inside and lie on.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 9440 | From Illinois | Registered: Aug 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Rumigirl
I appreciate your kind words. I cannot take all the credit. . . I share it with our BELOVED TINCUP 💚 She lit the fire. She’s the reason many of us became our own patient advocate. WE ARE ALL IN THIS TOGETHER!
I, like you, look back on my old posts and have absolutely no recollection. Neuro degeneration. I do remember Glen Campbell’s song “ I’m Not Gonna Miss You.”
Also, while searching the Medicare Physician Prescribing link, please be aware if your search doesn’t show results, it could be because the Doctor doesn’t participate with Medicare. This is happening more and more as doctors are severing ties with Medicare and insurances.
All the best to you.
Posts: 3075 | From Florida | Registered: Nov 2016
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Oh, I thought the shoes could be anything natural especially the bottom, such as a leather sole, jute, etc. Course I've been doing my Earthing barefooted.
Guess we're all still learning.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6525 | From Columbus, GA | Registered: Jul 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Update
I am now a new established patient with 2 Nurse Practitioner’s that opened their new Pain Management Clinic!
1st visit was lengthy, health histories, contracts to sign, scripts for blood and drug urinalysis. They do not prescribe until urinalysis is completed so they recommend to contact your primary for them to continue your current pain meds. They will prescribe at your next monthly appointment if testing comes back with no red flags. (They test for creatinine. Low creatinine can be a red flag because drug seekers try to flush out illicit drug use by over hydrating)
Yes, you will definitely get push back from your primary. My primary straight out admitted he did not want to get involved with opioids but came up with a plan for a 2 week script, stating my urinalysis should be completed by then.
I then called back new Pain Management, explained my situation and asked for a sooner appointment. They agreed. My 2 nd appointment I was prescribed my pain med with no discontinuing in care.
Pain Management contract must be signed. No alcohol. No OTC products with alcohol. Random urinalysis to be done the day they call. Take as prescribed and pill counts, Mandatory script for Naloxone spray.
All understandable.
My new Nurse Practitioner told me she now has a majority of my old Pain Management’s patients. I said that’s a good thing. Her patients have been vetted and vouched for, are very compliant with strict criteria ( exercise and stretches) and taking their meds as prescribed.
YOU MUST ADVOCATE FOR YOUR HEALTH NEEDS!!!!!
Here’s some tips to get a Pain Management provider to LISTEN to you:
1. It’s imperative that YOU show that your health is your 1# priority. I brought my iPad that contains all my medical records. Documented diagnosis’s hold the most weight. (Lyme not so much)
2. Be dedicated to exercise! Neck stretches, back stretches, walking, swimming, light weight resistance training, balance exercises, ect.
3. Make a list of what you utilize in your tool box pain strategies. . Epsom salt baths, heating pad, frozen gel packs, lidocaine patches, PEMF mat, grounding, alternative days of revolving NASIDS, hot/cold showers, shower chairs, grab bars, cane/walker, supplements (magnesium/ curcumin/ turmeric), support groups, ect.
4. You must be able to articulate your physical disabilities with AND without pain medications. Make a list of all the things you can do with pain medications and all the things you can’t do without pain medications.
5. Quality of life to be able to spend time with family and loved ones MATTERS! State your goals.
Some extra tips that blew my new Nurse Practitioner away. . .
I showed her my sleep app on my iPhone that monitors my disrupted sleep, talking and mumbling, coughing, snoring, constant movement due to pain.
I showed her my bathroom scale that’s hooked up to my iPad that monitors bmi, water, muscle mass ( low when bedridden), weight (weight gain when unable to exercise due to pain flares), heart rate ( scary POTS ups/downs daily, and last but not least it also monitors my metabolic age ( changes daily).
I showed her all 6 of my specialty provider’s patient portals.
I showed her my My Quest app that monitors all blood work back to 2013.
I also showed genetic HLA-B27 gene, implicated in spinal disorders.
Finally, selfies pictures of before and after my Lyme diagnosis. They might not believe in Chronic Lyme but they will believe in all the damages that has been done to the WHOLE BODY that they are seeing with their own eyes.
Hope this helps with anyone who sufferers with chronic pain issues. If this doesn't work, move on to another provider! Everyone deserves a life worth living ♥️
Posts: 3075 | From Florida | Registered: Nov 2016
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