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Apr 14, 2017 · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

Yummy, Jim! Pizza sounds SOOO good!

How did you get Medicare to pay for the Lidocaine? My PCP has submitted a couple of different diagnosis & habe been rejected. Plurodynia & Post thoracic surgical traumatic neuroparhy.

Apr 14, 2017 · ~ Flat out at the bottom: so many bills to pay, not sleeping, worry ~ in Depression & Anxiety

You are very welcome my dear! I understand “floundering” within your faith. I was in that position last September. God knew I needed some help because of the financial, health and emotional struggles i was having. A friend invited me to a women’s conference. I didn’t want to go since I didn’t know anyone but her. I made myself go & it was the best thing I did for myself. I made 10 new Jesus friends, God made himself very real to me & I have a completely new outlook on life.

You got this girl! Just keep talking!

Apr 13, 2017 · Trying to stay upbeat. in Brain & Nervous System

You can ask for an IV medication for the re-flux to help that; you can also ask for an anti-anxiety & pain med to help you for lying comfortably!

Apr 13, 2017 · ~ Flat out at the bottom: so many bills to pay, not sleeping, worry ~ in Depression & Anxiety

@amberpep. I’m so very sorry what you are dealing with. At 72 you are supposed to be enjoying life and relaxing.

Dave Ramsey, Financial Peace University says the first priority in your life is to make sure you have a roof over your head, food to eat, medication for your health and then the rest of the financial concerns. Then you need to prioritize the remaining bills/obligations. You need to think about the reality if you are able to work 40 hours/week. Is that something you can physically do? is there a job that you can do without physical/emotional/mental limitations? Have you thought about being an Uber Driver? Not sure if you have a car or like to drive, but people can make some decent money doing that. You may need to thing about non-traditional jobs at this time of your life. I don’t want you to think I’m telling you you are old or ancient, but you expressed some physical concerns like IBS, which you need restroom facilities nearby. Insomnia is horrible and it sounds like it is anxiety induced. If you are able to reduce some anxiety you will sleep better. You haven’t said what medication you are taking, but a short term anti-anxiety med may help you. Have you consulted your doctor so he/she knows what you are experiencing?

The pain you speak of is so very true, so don’t diminish the role it plays in your life. The burden you carry is heavy; have you thought about sharing it with someone. Talking will help lighten the load. The other person may not be able to help, but there is one other person in the world sharing your life. Sometimes we need that little oomph to push us to the next level. The anxiety is a terrible thing. If you are able to keep the lines of communication open with the people you owe money to that will be in your best interest. Even sending in a small payment is better than nothing, it shows you are at least trying. By not responding or discussing things with them, they think you don’t care or are out to screw them. The threat of collection agencies is terrible, but sometimes a necessary evil to give time to get finances figured out.

My mom just turned 73 and my dad is 75. They had a time after they sold their business and then the buyers defaulted where they didn’t know how they were going to make it. It took some time, but they did. They didn’t discuss a bunch with me, they told me what had happened and how they were struggling and didn’t want to get me involved, so I understand not wanting to burden your kids. I am thinking you are single and without a significant other, so then it is doubly as hard.

Sometimes it is better to write your concerns out on paper so those aren’t something rattling around in your head. By just getting them out you are able to allow positive thoughts into your brain. You need to think of things other than finances and how you aren’t going to be able to make it. I hope I didn’t overwhelm you, I just am a type of problem solver and overthink things sometimes. Blessings!

Apr 13, 2017 · Trying to stay upbeat. in Brain & Nervous System

@ryman . I found this information from the National Institute of Health. It is their fact sheet, but always follow the orders of your doctor and/or those administering the test/procedure. I hope this helps! I have had these done; I am a little younger than you, but with chronic pain, I didn’t find the procedure difficult and the recovery to bad. It is hard to lie flat, but I was able to have a pillow under my legs and head. The reason you need to lie still and flat is to allow the puncture site to seal so no fluid leaks out of your spinal canal. If you have had an angiogram, it is very similar to that. Please ask more questions!

LUMBAR PUNCTURE FACT SHEET
For:____________________________________

What is it?
A Lumbar Puncture (Spinal Tap) Test is a procedure to remove a small sample of cerebral spinal fluid from
the lower spine. A needle is inserted between the vertebrae (backbones) in the lower back and into the
space containing the spinal fluid which surrounds and cushions the brain and spinal cord.
Where and when is it performed?
How long does it take?
About 20 to 30 minutes. There is an additional recovery period of about 30 minutes after the test, when you
will remain at the clinic.
Why is the Lumbar Puncture test performed?
To obtain a specimen of fluid for testing. Cerebrospinal fluid (CSF) bathes the brain and contains proteins that
can provide clues about disorders such as Alzheimer’s disease or changes in the brain that accompany aging.

Does it hurt?
You may experience pressure when the needle is inserted. You may also feel
some very brief leg pain while the needle is positioned because it may briefly
touch a floating nerve ending.

How is it performed?
You will lie on your side with your knees drawn up toward your chin as
far as possible OR you will sit on the edge of an exam table, in a hunched
forward position.
The doctor will cleanse the skin over your spinal column with iodine
An injection of local anesthetic may be given at the puncture site
A needle is inserted into your spinal fluid space
Spinal fluid is collected into specimen tubes for
laboratory testing
The needle is withdrawn, your back is cleaned, and
a band-aid is placed over the spot

Frequently Asked Questions
Q: What if I’m unable to flex my back and legs?
A: The test can be done without bending, or
while sitting
Q: Is the entire needle put into my back?
A: No, but the needle must be long enough to
pass through the muscles of the lower back
Q: Can I be paralyzed if the needle hits the
spinal cord?
A: No, there is no need to worry about spinal
cord damage. The needle is inserted well
below the spinal cord

AFTER-THE-TEST INSTRUCTIONS

After the test
You will be asked to lie down for about 30 minutes.
You will be given something to eat and drink.
While you are recovering, please report any of the following symptoms to the doctor or nurse:
– Headache
– Tingling
– Numbness or pain in your lower back and legs
– Problems with urination
You will return home after the recovery period.

Instructions to follow at home
Drink at least 6 glasses of fluid (no alcohol) in the next 12 hours.
Remain quiet for the next 24 hours.
Avoid any strenuous physical activity for 48 hours – no exercising, heavy lifting, or repeated bending.
A mild headache may follow a lumbar puncture. It is often relieved by caffeine, aspirin or tylenol, and
drinking plenty of fluids.
If you develop a headache that persists more than 24 hours, in particular one that is worse on sitting
or standing, and better when lying down, then call the doctor or Study Coordinator at the clinic.

Apr 13, 2017 · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

@goodtime 376. My insurance in Medicare and MN Medicaid, and the only expense Medicaid will help cover is lodging up to $50/night and a $$ amount for meals—this is great, but I have to pay out of pocket for it, then submit receipts for it, then wait up to a month for reimbursement. The other reason it would be difficult to attend the Pain Rehab Clinic is my son. He is 21 and just diagnosed with Autism. Yes, 18-20 years to late. He is what is formerly known as having Aspberger’s Syndrome. He has the body of a 21 year old, the intellectual age of someone who has a Ph.D., the social age of a 10-15 year old and emotional age of someone ages 2-10. When I was in the hospital from April 29-June 7, 2016 he didn’t do well. He took care of our 2 small dogs, managed to eat but that was it. He didn’t do laundry, take out trash or recycling, vacuum, or do dishes unless he needed something. He used all the disposable plates/plastic ware/napkins. He did not tell anyone where I was, what had happened and did not communicate with others except when he went to the library. So, I am concerned, even though I would be gone from early Monday morning to early Friday evening and in contact by phone. I’m trying to get a support system set up for him to use in the case I wouldn’t be around due to hospitalization or some other unexpected emergency. His father hasn’t been in his life since he was arrested in 2003, and wasn’t a present parent before that. My daughter is 23 and not involved in our lives so she isn’t someone to count on.

I do not have much of a support system. People tend to shy away from people with medical issues. I have a therapist I meet weekly with, and I just started a job at the local Family Dollar store. I do have a church I attend infrequently since finances are so tight I am unable to afford the gas to travel 70 miles round trip, and no one to carpool with. It is only my faith that has sustained and brought me through this turbulence. Thanks for asking and sharing a bit about your pain! Blessings!

Apr 13, 2017 · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

@JustinMcClanahan I have found several discussions to participate in. I find everyone’s experiences interesting and informative. It’s nice to know I’m not as “abnormal” as I’ve decided I am. HaHaHa!

I wanted to make sure I was using the correct terminology so I researched quickly some of the most reliable sites. This is one of the definitions. “CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain” per http://rsds.org/telltale-signs-and-symptoms-of-crpsrsd/ . I have found post-surgical pain, fibromyalgia and even everyday bumps are so much more painful than before I had significant pain.

CRPS at CPS is the same disorder. Doctors without much experience dealing with patients having pain issues accuse the patient of “making it all up, “it’s all in your head” and “you are just saying this to get medication”!

Some of the latest research shows Low Dose Naltrexone is effective in helping with CRPS/CPS as well as Fibromyalgia. (http://rsds.org/wp-content/uploads/2015/02/Younger_LowDoseNaltrexone.pdf) Naltrexon has, until recently, only used in alcohol withdrawl (in a much higher dose, of course). I have found by using the Naltrexone 4.5 mg and Cymbalta, 90 mg in divided doses, has helped with this pain, but not alleviated it.

I found this information rather interesting.

“Baseline erythrocyte sedimentation rate predicted over 80% of the variance in drug response. Individuals with higher sedimentation rates (indicating general inflammatory processes) had the greatest reduction of symptoms in response to
low-dose naltrexone.” (http://rsds.org/wp-content/uploads/2015/02/Younger_LowDoseNaltrexone.pdf)

So if a prescriber were to do this simple test, it could predict if it would be effective in helping treat chronic pain. One of the other things I found, Naltrexone is a compound medication and not every pharmacy does the compounding, but the Mayo Clinic Pharmacy does. But when initially filling, it will take several days to fill the first order, after that just a day heads up & they will have it done.

My PCP has now (not exactly now-January 4, 2017) prescribed a topical cream consisting of Lidocaine and diclafenac. Since insurances will only allow lidocaine 5% or higher for shingles, they will not pay for it (Mayo pharmacies charge $189/30 oz (600 ml)), but will pay for the diclufenac, I have to buy the OTC 4% lidocaine cream available, the pharmacy will send the powder diclafenac and I have to mix it together. I hope to see results of some sort from this. Since it is a topical cream and not a patch, it will need to be applied TID (3 times daily). I will check back after a trial of this. My PCP is out of other ideas if this does not work. He has said if I wanted medical marijuana, he would help me with the process. I hope not to go that road since it is expensive, even with grants available in MN, and not knowing right now how it would affect my nursing license.

Apr 13, 2017 · Trying to stay upbeat. in Brain & Nervous System

@ryman, I’m really sorry you didn’t hear what you were hoping to. I agree with @hopeful33250, activities to keep your mind busy or occupied is the best. do you have support people you are able to talk to, vent with, cry with? If I may ask, what is your age? Not that that matters, but suggesting activities is easier sometimes helpful when knowing that. When you are ready, please share some of the things your doctor spoke about. I’s always good to ask questions, talk about some of your fears of the unknown, of the tests, and how we can possibly be the best support for you! Blessings!