How do i write without crying?! Complex Regional Pain Syndrome (CRPS)

Yes crps no i

@tylerj. I thought, somehow, that you are in Michigan. Since you're in Scottsdale and there is a Mayo Clinic near you, has Lisa been seen there? I know it can be a challenge to be seen at Mayo Clinic if there are insurance issues but if you and Lisa are interested then you could call their Billing Dept. and ask if they take Lisa's insurance. Every state is different in how insurance works and which clinics take which insurance plans. I'm not familiar with Arizona but I do know that the insurance issues are different in Arizona than in Rochester, MN where I go to Mayo Clinic.

So, back to some of my questions. Are you looking for medical help with Lisa and for another medical opinion? Or are you looking for help at home with your wife?

Anything realy

@tylerj Scottsdale, AZ?
Have you tried to get an appointment at Mayo there?

If you can’t get in to Mayo, the Core Institute is another option. They are at
8952 E Desert Cove Ave, Suite 113
Scottsdale, AZ 85260
866-974-2673

There are lots of great doctors in Scottsdale you can try.

I’m across the valley in the northwest.

Hi @tylerj, I moved your message to the Brain & Nervous System support group where you will find many members talking about Complex Regional Pain Syndrome (CRPS). Here are a couple of helpful discussions you may wish to join.

- New to CRPS complex regional paint syndrome: want to talk
https://connect.mayoclinic.org/discussion/crps-complex-regional-pain-syndrome/

- Anyone with CRPS been to Mayo Pain Rehabilitation Centers?
https://connect.mayoclinic.org/discussion/anyone-with-crps-been-to-mayo-pain-rehabilitation-centers/

You can find many others using search. Please see these results: https://connect.mayoclinic.org/search/discussions/?search=CRPS

Bless you. It is easy to feel your desperation and exhaustion.
You might try the stellate ganglion block. I had one several years back so I would better understand any side effects my Mom might experience. I pain 1000$ cash, but your insurance will cover it. https://cahabapain.com/pages/stellate-ganglion-block-for-crps#:~:text=The%20procedure%20itself%20involves%20an,upper%20arm%20and%20upper%20chest.
Were the breaks indicative of bone loss. Have you had imaging to determine healing and structure. Probably all in the lost post.

Tyler, how lucky your wife is to have you in her corner, fighting for her! I too developed CRPS in an arm after surgery. Twenty years later, it still bothers me, but not 24/7 and it is a million times better than when it began. My treatment consisted of steroids, gabapentin, cbd oil capsules, nerve blocks, wearing lidocaine patches and physical therapy. My care team consisted of an ortho doc, pain clinic, neurology, physical therapist and psychologist. For me, no one of the above therapies was magic, but together they were.

I know its hard to be the caregiver. Take time for yourself. So important!! Also, as hard as I imagine some days are, don't give up on your wife. Trust me, she hates every part of this disease.

Sending you and your wife all the good vibes for healing and coping along your journey.

Please accept my prayers for both of you. I do hope that there is a family member or friend who can give YOU the support that you also need.
I know from experience how draining it can be to see a loved one suffer, and even more so when there is little that you yourself can do to address their suffering. But know this: She DOES benefit on so many levels from the love that you show her every day from even the simplest of acts.
And on a personal note, I have a deep understanding what is entailed in this horrid diagnosis that she and I have in common. It's what a neurologist concluded is wrong with my ankle/foot/leg after what seemed like a gazillion specialists, MRIs, nerve conduction/muscle studies, and more were done over a period of over 18 months. I, too, had a serious fall, onto a concrete floor, impacting most especially my entire left side from toes up to shoulder/arm/elbow/hand/fingers....Yeah, tremendous, complicated pain. Lots of physical and occupational therapies, and I am STILL in PT for my knee, but the ankle/foot/leg has not ameliorated. So the neurologist who diagnosed the complex-etc. diagnosis sent me to pain management doctor but that specialist wanted to inject my lumbar spine area. I wasn't keen on that for very specific reasons, so I have not gotten pain relief as of today. Meanwhile, I learned that I should explore another avenue and I'm researching doctors (including a physiatrist) to help me. The fall was in June of 2021, so it's been 2 yrs and 3 months that I've been dealing with trying to regain a life without constant pain defining it. So I do commiserate with what both of you are going through, especially your wife since she suffered the fall that resulted in her injuries.

What can I say that might be of help?
•Accept the help from those that are sincere in relieving you of a particular responsibility, like house or yard chores/tasks, grocery shopping.
•If you are offered meals, don't turn them down. As long as it meets your specific diet needs (e.g. watchful of gluten free, cholesterol, sugar, sodium, etc.) you can have less stress providing meals for yourselves. You can always freeze majority of casseroles for future meals.
•Investigate what your insurance covers as far as in-home care/assistance. I learned that my insurance will even cover the cost of an at-home physical therapist and even a special bed should I ever need that, and also other items. In-home equipment can be very costly, so investigate and keep a file for possible future reference.
•Involve a family member or friend to locate organizations within your town/city/county that has services such as in-home health care like nurses. I located an organization for my friend who was diagnosed with cancer, for home visits, emotional support, even assistance with meeting medical costs and rent. Specific criteria must be met BUT IT IS AVAILABLE!
*Investigate organizations that offer transportation to medical visits. Many are without cost or for nominal fee. Absolutely great for patients who have mobility issues or use wheelchairs.
•Learn the word PHYSIATRIST ( not psychiatrist) and how that medical specialty can possibly be of value to your wife's team of doctors. You will be dealing with a TEAM, each member which can contribute towards her overlapping and copious issues.
•A highly qualified OCUPATIONAL therapist was on my medical team to address the damaged ulnar nerve in my elbow/lower arm and how it affected use of my left hand and digits. I do hope that your wife's team includes an occupational therapist who is experienced in addressing the specific needs of your wife. Also a PHYSICAL THERAPIST, but do vet the person/facility as you would for the OT. I had to leave one when it became evident that the therapist was not at all attuned to my pain and what augmented it. I am presently in a PT center where each staff member is centered on my progress. Major difference in my making progress!
•And yes, a BEHAVORIAL therapist should not be dismissed. I find it very beneficial to be able to talk to someone other than my husband about my 24/7 pain (which in the case of my ankle/foot/leg/toes is a constant Pain Level 5-6 burning nerve pain up to days when it's more like a Pain Level 8 (out of 10). By the way, it's essential for you to have the ability to unload to an understanding, trusting friend/relative also. And perhaps there are SUPPORT GROUPS via a hospital that you can join.
•Please realize that such pain and being under its jaws for such significant time, CAN and DOES MAKE THE PERSON IRRITABLE, CRANKY, and even RESENTFUL and ANGRY. It's not YOU that brings these emotions to the surface. It's the overwhelming PAIN, and the realization that there does not seem to be a light at the end of the tunnel.....at least, NOT JUST YET for me but I am holding onto the hope that THERE WILL BE. I am not crazy enough to think that everything will return to what "was" and the parameters of how once I defined my life. No. But I have the hope of being able to LIVE my life with less pain and within parameters that are meaningful.
•DO MAKE TIME FOR YOURSELF! Perhaps an activity that you've generally enjoyed, be it a jog or brisk-stepping walk in your neighborhood; a bit of time on your treadmill, etc.; quiet alone time listening to music and reading; grabbing a coffee with a friend or a bile ride while a companion stays with your wife. The point is to do SOMETHING that is for YOU, because that nurtures YOU, which in turn benefits your wife as well.
•Celebrate the good periods of time when her pain has stabilized to a level where she can relax and feel happy about the lessened pain. And both of you should SMILE! And laugh! Because smiles and sharing jokes/laughter🤣 helps to release endorphins which in turn just makes you
feel good! 😊 Watching a comedic movie is something that hubby and I enjoy also.
•Aromatherapy has been shown to be beneficial. Explore that option because if you both enjoy the scents, then you can BOTH benefit from the effects. I especially enjoy and benefit from lavender, but there are others also. Don't buy inexpensive (aka cheap) oils, candles. The released scents from the cheap ones can be more stinky than pleasurable which won't make you want to use them (which defeats the purpose).

Okay, I've written too much...but I did want to share what has worked well for me and then in turn makes my husband feel better as well. You each have a long road ahead but take it one day at a time, sometimes even an hour at a time. Just don't let go of each other's hand as you navigate the journey.💝

God bless you both.

I had complex pain Regional syndrome. I was in occupation therapy for a very long time. They really help with manipulate the body that is in pain. Also massages that help . They show you exercises to increase motion in your hands. Also electric impulse stimulation. It's a painful process but therapy will get her to writing again. Cold or heat applied at therapy and home helps also. Best wishes to you and your wife.

Look into Scrambler therapy