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Chronic Pain
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Posted 3/25/2019 2:00 PM (GMT 0)
hey hello,

My name is Meracle (not my real name) and I want to introduce myself to you guys.
I live in the Netherlands, in a city called Dordrecht.
Last year was when all the problems began; and my life came to a stop.
I have been struggling with pain in my feet quite some time now, it goes that far back that I don't remember not having pain in my feet after a day of work/walking/fun.
2 years ago my doctor diagnosed me with heel spurs, and sent me home with some exersizes and the fact that I needed gel soles. All set and sone; or so we thought. the pain that was supposed to get less over time with some rest and care, only got worse. so Februari 2018 was the time I went to my physical therapist to help me. He thought it was heel spurs too, and that it should get better now I was recieving my psysical therapy. But 6 weeks in, it did not get better, only worse. The massages, tape and excersizes did not help properly, so they descided it was time to go to the hospital to run some tests. First, I was given an echo of my heels, where they said that my heel chambers had a leak, so I was walking right on the bone of my heel. To test this theory, I got sent to a Orthopedist. He asked for some x-rays to be made, and according to those, he diagnosed me with chronic fasciitis plantaris, and gave me 2 options: I could either get some injections in my heels against the pain, or have both feet set in casts. By this time, the pain was so bad I could not walk and work anymore, but I could still stand on my tippy toes to go to the toilet etc. I was reluctant, had a bad gut feeling. but because multiple people were pressuring me, I chose to go for the casts. They were supposed to be on for 6 weeks, but I only made it 18 days. The first week, the pain began, the second I could not stand on my toes anymore, and half a week later I begged them to take it off; I felt like I was dying.
The casts were removed, and a week later my physician diagnosed me with CRPS (chronic regional pain syndrome). I went to the hospital to get that put on paper, but again, after some physical research the doctor told me the diagnosis was wrong. In the meantime, the pain spread to my ankles, knees and toes. The painkillers I used to take stopped working, and everything we tried painkiller wise, did not work. So here I am, in intense pain, with pain attacks almost every other day, nothing to soothe the pain and no diagnosis. We are busy running tests, like my bloodworks are in Germany as we speak to run thorough tests for Lyme, but I am helpless. I do not know what to do. without working painkillers and a diagnosis, I cannot do anything, we cannot get into therapy because we do not know what causes the pain, and because of the pain, the only thing I am able to lie on the couch. I have a chronic fatigue, sleep 14-18 hours a day and I am not the person I was before.

I hope to get her back someday.
Posted 3/25/2019 9:41 PM (GMT 0)
Meracel:
You have been through the wringer with foot and leg pain, without a clear direction or definitive help from availing medical services.

I am sure that the absence of a diagnosis is frustrating. You are left not knowing how to get better.

Unfortunately, that is the nature of medicine when you do not fall neatly into a category of a known diagnosis. Medical science does well when the diagnosis is apparent and the body is able to help itself in regaining health with supportive care (ex. A case of pneumonia where prescribed antibiotics provide a cure). Medical science does less well when a diagnosis is murky or where presenting symptoms overlap several different possible conditions.

You mention that CRPS has been suggested to you. I would not completly discount CRPS as a possibility. Especially given the picture of the migration of your pain (feet to lower legs to knees) and increasing pain intensity.

I had RSD (reflex sympathetic dystrophy) about 25 years ago, affecting my right knee and lower leg after a skiing injury with ACL tear and surgery. The first surgery with ligament graft did not hold. A second surgery and second graft followed. The second graft also failed. Better sense would have had me given pause to having the original orthopedic surgeon perform the second surgery. I believed in the greater expertise of physicians and took the orthopedist at his word he was confident in a second surgery. Big mistake on my part. My knee came out of the second surgery swollen and inflamed like a hornet’s nest. The trauma of a second surgery was the ignition of a wildfire of pain the likes of which I had never experienced and that I soon care to identify as RSD.

I can honestly say that the RSD pain was one of the worst of pains that I have ever experienced. The RSD pain was a 10 out of 10 score of pain on the reichter scale of pain. If someone had offered, I would have agreed (at the time) to have had my leg amputated. The pain was that severe.

CRPS (RSD renamed) can develop even with a minimal injury. The mechanisms of how CRPS develops are not fully understood. But it does seem to involve an alteration of heightened sensitivity to pain in the brain and spinal cord and an autonomic nervous system that goes amuck.

Do you have any trophic skin changes to your feet or power legs? Skin that is shiny? Skin that looks fragile as though it is stretched too thin? Mottling of the skin, uneven and spotty reddish or bluish or whitish coloring? Exquisite pain when moving affected joints? Swelling or effusion? Skin that actually feels hot to the touch?

There are specific modalities and treatments for CRPs. There is hope for less pain. I did get better. Today my right knee and lower leg are no different than my left.

Read up on RSD and CRPS, and see if any of the symptoms are in line with what you experience. Try some of the basic self-care activities (massage to the affected area, alternating warm and cool compresses to the affected area, wearing a light compression sock/knee high). Knowledge is power. If any of the self-care techniques provise you some relief or no relief this, too, will give you and your physicians information to work with.

In the meantime, feel right at home on this forum. Everyone here has pain, to some degree or another, and we are all empathetic to the plight of pain.

Sending you a long distance hug of support,
Karen
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