Frustrated by lack of diagnosis

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Fusiongirl
Veteran Member


Date Joined Apr 2012
Total Posts : 608
   Posted 2/22/2017 10:15 AM (GMT -6)   
Without the right pain doctor, you are going to continue to suffer. Have you taken many photographs of your legs, showing discolouration etc? At least something to show your doctor. My understanding is that CRPS never goes away but can be controlled, ketamine infusions being very helpful. I'm a member of a chronic pain website on FB and a lady there has it throughout her body, ketamine helps her a lot to survive.
Unfortunately without the right treatment, keeping mobile is difficult if not impossible. There is a book out there by Lorimer and Mosley I think, called Expalin Pain. Its a very good read it was recommended to me by my physiotherapist.
I have a friend who has it in her leg after breaking it, but now she has it controlled with neuropathic pain meds. She hikes, and leads a fairly normal life...so there is hope if you get the right help. Good luck.

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 665
   Posted 2/22/2017 10:58 AM (GMT -6)   
Lessa:
You and your wife certainly had an adventuresome afternoon. With the rugged terrain and cold weather, I can see how the distance home felt like a marathon.

Kudos to both you and to your wife. You partnered with one another as a true team and made it home. It sounds as though your wife is fully vested in your well-being and fully vested in helping you in your recovery. That's a wonderful asset to have.

I would tell you that getting the bottle of ginger ale for yourself, as you did, is exactly what you need to do in order to not lose independence with your self care and function - within reason, of course.

In my life with chronic health, it is my personal resolve and fortitude that continues to see me through. I will ask for help of others only on the rarest of occasions. Why? Fending and doing for myself, in its own way, is a form of rehabilitation and on-going personal therapy.

Only you know your body. Only you know your tolerances to pain, nausea, and the distress of being unwell. Always exercise your best judgment in deciding whether to proceed with a task independently or to request a helping hand

But I will always advocate and cheer for the person who continues to be functionally independent, as this is my personal quest for myself.

Your wife needs rest and quality sleep in order to be her best person. I am glad that you were able to get the ginger ale for yourself and not awaken her.

The tone of your writing has a bit more uplift and your true personality is shining through. Good, good. Use this forum as a safe haven to express and work through your emotions to a better place. Be open to receiving the support and commaraderie as stepping stones to
finding a pathway to reclaiming your health.

Nameste,
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/22/2017 6:41 PM (GMT -6)   
Fusion - I have but unfortunately they want to see it first hand and it doesn't matter how often I take pictures, or have my wife as a witness, very frustrating! I agree I need pain management and I'm going to talk to my PCP because we move April 1st, not enough time for a PM referral to go through.

Seashell - Thanks, it was an adventure but we made it. I really treasure all her help, and thank her for it daily and try my best to show her how much I appreciate everything. She did roll her eyes at me getting the ginger ale, but said she figured I'd do it since she had forgotten. I try and keep as much Independence as I can, but she can be a bit over protective of me. It's a balance we are trying to work out. Thankfully the pain is less today, still highly unmanaged, but I really think the fresh air did me some good. It's a bit too gross out for a walk today, and with an appointment tomorrow I can't risk flaring the pain worse I need to go to that appointment, so I'm keeping low key for my energy and pain level.

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/24/2017 2:02 PM (GMT -6)   
Yesterday was a long stressful day. I had a big appointment, and had saved up as many spoons as I could, but quickly burned through them. By the time I got home around 6pm after being out all day I was in so much pain and so exhausted, my wife whisked me to bed and demanded I rest and not worry about anything. I fell asleep after taking my meds and woke up briefly for food, liquids and the occasional bathroom break.

Today I'm much better though I have huge dark circles that almost look like I was punched in the face. Still going to take it easy but I feel like I have enough energy to deal with the daily life things, thank goodness.
Undiagnosed chronic peripheral neuropathy
On:
Cymbalta 90mg, Effexor 150mg, Adderall 40mg, Trazodone 100mg, Amlodipine 5mg, Vitamin B12, C, D3, magnesium, cranberry pills, multivitamin
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