Shoulder fracture re-activating EM in feet?

General
1

My EM began with swelling, then motor/sensory neuropathy, in legs/feet following a knee and rib fracture. That was 20 months ago. PN and EM remain idiopathic (no diabetes, family history, etc.) After a while my symptoms decreased and were quite manageable for at least eight months. I was even walking several miles a day without problems--so grateful for those good days. But eight days ago, I tripped on a hole in the pavement and wound up with a badly fractured shoulder. Three days later, the EM came roaring back: feet swelling up, turning red, and burning. That was a week ago, and it’s still happening. So I’m guessing that the inflammation and bad circulation in the shoulder may be re-triggering the EM in the lower extremities. Any thoughts?

(I originally posted this in the discussion about injuries and fractures causing EM – I’m reposting it as a separate discussion at mads’ suggestion.)

2

This looks really helpful, Tizzy! By a stroke of good fortune, I have a four-month followup with my rheumatologist TODAY, and I will ask her about CRPS. And it wouldn't hurt to try some high-dose C. Thanks so much!

Tizzy said:

What bad luck,I am so sorry to hear that Em has returned with a vengance. Mads and I have spoken about the simalarities of chronic reflex pain sydrome and EM . I think that the way EM begins in feet or even foot and spreads shows it does set up patways of pain and CRPS is a more widespread and nasty version of this. So I strongly feel that it can reactivate EM .That is certainly not to say it does in all patients as causes of Em are so variable,but neurologically there would be a reasonable assumption it could happen. Talk to your doctor about good pain relief for your shoulder and hit up physio treatments for pain and inflammation.I have heard that high dose vit c after a fracture can stop CRPS ,so might be worth a try. Of course stress can make Em worse but this does seem a bit more than just stress could cause. Find out from your doctor what you can safely take to calm things down ,you don't want to hear that if only something had been done sooner the outcome could have been improved . Perhaps mention CRPS concern with EM flaring again and ask about things that could calm shoulder eg anti inflammatory like Meloxicam short term and wether some Tramadol would be useful - Tramadol treats both nerve and "real" fracture pain. Hoping I have not overloaded you,just think from your past history it might be better to err on the side of caution and have you back on the managable path asap - Tizzy info on vitc
www.sgptr.com/vitamin-c-effective-in-reducing-crps
3

I am so sorry LynnV. That is terrible. Not only are you injured but your EM is back with a vengeance!

I don't know if there is something to it...injuries and EM but I have a similar story. I had mild EM for many years ( didn't know it at the time) Right after my Hysterectomy My EM came on with a vengeance. It actually started when I was still in the hospital recovering. I was doped up on morphine but when they would try and take my blood pressure on my left arm I would get this horrid pain in my left hand going up my arm. We had to put a sign on my bed stating to the nurses not to use my left arm. For some reason at the time my right arm was fine.

Now after experiencing full on EM I now know what it was. It is the same electric like stinging ,prickly, burning pressure that I now get in my hands ,feet ,knees and sometimes scalp when I am really bad. As Tizzy stated it is as if the stress triggers it to get worse. I wasn't under actual stress I was so doped up but my body was under a great deal of stress after the trauma of surgery.

I would be curious to know if others have seen worsening or the start EM after Trauma ,Physical or emotional.

Please keep us posted on how your appointment went.

Take care,

Alina

4

Yes, my husband's EM started after a hip replacement op 7 years ago. It was first diagnosed by a young physiotherapist (yes Tizzy, thumbs up for physios!!!) as CRPS when he was leaving the hospital. After that he had 3 years of pain and seeing various doctors to have him properly diagnosed and get some relief. We got that eventually and again it was diagnosis on the first visit, though I do not think our new GP has ever seen it in life but recognised it straight away as Mitchell's syndrome ie EM.

5

I wonder how many people’s EM is from injury or surgery or the medications given during or for it.

6

Hi LynnV -

Well that is interesting in the HUNT for a possible cause of EM for some of US - Most of the doctors have never heard of it, or seen it, and don't know how to treat it ... let alone know what causes it - Perhaps it is triggered by a trauma to the body in one way or another - we may not be aware of any stress to the body or mind untill it is too late (usually the case) and then we have to deal with it as best we can in what ever way we can ... and it isn't easy coping with continious pain every minute of every day - every week - every month - every year, year in & year out - this sort of pain tends to get one very down and frazzled to say the least ... I have had some relief in the last few weeks since being prescribed LYRICA (Pregabalin) - I am on 225mg Twice daily at the moment and could possibly go up to 300mg x 2 daily - but doing reasonably well on the 225mg x 2 daily .... It has reduced the severe pain for me so I can at least get around a lot better - I still have some pain and some flares but they aren't near as severe as before - unless I just can't feel them, maybe as the Lyrica is a Nerve Function Medication .... (anti epileptic?)

It might be worth giving it a go if you can get a prescription from your Doctor - I take a 150mg & a 75mg capsule to make up the 225mg x twice daily ....

Cheers and Take care

Greg (frostbite)

7

Lynn,

I'm very sorry to hear you're having such trouble with your EM as well as your injury. I wanted to reply because my EM history is similar to Alina's. I'd also like to highlight the importance of early diagnosis of EM (which did not happen with me) as well as the role of slow titration of medication in helping EM sufferers deal with pain while decreasing the number and severity of unwanted side effects.

When I was in my 30s I had mild Renauds in hands and feet, but after menopause I developed hot feet and hands. I had very mild EM for many years without knowing what it was. It came on if I did a lot of exercise and became very warm, but it resolved on its own fairly quickly.

Then I developed a small tumor under my right foot--a genetic defect that caused blood vessels and nerves to intermingle resulting in some serious pain. It also caused blood to back up when the area was inflamed. One of these episodes occurred when I was returning home to Canada from Europe. The air travel triggered blood clots and I developed a nasty phlebitis which took several months to settle down. After that my right foot would sometimes flare if I stood too long. Of course ice and elevation were prescribed to reduce the swelling since heat made the phlebitis much worse. The tumor grew and became inflamed at times which provoked more blood clots. It was deemed inoperable and specialists told me the only option that might work was sclerotherapy (IV injection of acid or caustic substances into veins to kill blood vessels and tumors).

Because no one knew what the implications of that procedure would be on EM, I believe it was the major trigger for a new "level" of EM. While it helped reduce the size of the tumor, it triggered massive phlebitis and EM in my right foot and leg. Again the only relief came from ice packs several times per day. Eventually things settled down but I noticed that both feet were now flaring (feeling hot and full, but not painful) after too much walking or heat. However, cool water baths resolved the problem very quickly.

Eventually, it settled down to a few flares each day when I was too warm or in the night. But then I got a nasty eye infection and a low grade fever for 2-3 days. The fever caused massive flares and extreme burning pain in both feet for the first time! It was downhill after that. Within a couple of weeks I had constant flares and excruciating pain at night and severe pain the rest of the time. That went on for 3-4 months and I finally decided I would be willing to take medication.

Dr. Jay Cohen in California helped me and my wonderful new family doctor test various supplements and medications starting with the least intrusive and then finally moving into heavier artillery. Eventually, he recommended Lyrica. I started on only 6.25 mg/day of Lyrica and titrated it slowly. At only 18.75 mg/day, I was able to sleep for 2-3 hours at a time. By the time I got to 60mg I could sleep the night. (This shows how important gradual titration can be to finding the right dose. Doctors in North America tend to start at the recommended dose which can be way too high for many people and cause unnecessary side effects).

I am currently on just over 100mg of Lyrica/day spread over 5 doses. I find that taking Lyrica every 3+ hours handles the pain much better than larger doses every 4-6 hours. We are now very gradually adding Cymbalta to the mix because I was unable to tolerate any higher dose of Lyrica. I am still only at 15mg of Cymbalta which is only half the lowest dose available in Canada. It really helps with daytime pain and seems to work in synergy with Lyrica in reducing the number and duration of flares I have per day.

Although I am far from being flare and pain free, I am much better than I was a year ago. The exciting thing is that Cymbalta seems to improve circulation so that my feet are much less swollen (Lyrica tends to make feet swell!) and my skin is beginning to heal and toenails are starting to grow back. However, I believe that I may be near the the maximum toleration level of Cymbalta as I am experiencing some cardiac symptoms that do not seem to be settling down. So, we are looking at adding an antihistamine to the mix to see if blocking histamine may help. Combination pharmacy seems to help many of us deal with the various problems we encounter with EM.

Finding the right medication is usually a matter of trial and error and lots of patience. And finding ways to manage stress and fear of pain and EM are also very important. We've got to keep our amygdalas calm so they don't activate the stress response every time we are experiencing pain. MIndfulness meditation, EFT (Tapping) and self-hypnosis have helped me tremendously. I practice them several times every day and find that my attitude toward pain and disability is much better and my mood has improved.

I wish you all the best in your search for effective pain relief.

Dragica

8

Thanks for this post, always suspected but never thoughtbto ask if EM could be triggered or follow injury… Mine began after a particularly persistant (3 years non stop) and very debilitating episode of sciatic nerve pain in my left leg/foot. Symptomes vary from nearly unbearable to quite manageable.
Right now back problem and sciatic pain is back and going through a very stressful time in my personal life so EM is back with a vengence :frowning:
I do fitmly believe they are all interrelated

9

It's reassuring (though sad) to read of so many other experiences where EM followed physical trauma--emotional/psychological trauma too, though when DOESN'T major injury or surgery also stress the mind and spirit? My rheumatologist said yesterday she hasn't seen a lot of cases where EM followed injury, but she says it's possible, and she firmly believes in a connection with stress in general. Incidentally, my fall and the EM flare have come after a couple of months of highly stressful responsibilities at work.

Here's what the rheumatologist recommended: for three days, an increase in aspirin (three 325 mg/day), three daily applications of licodaine cream to the feet, and an increase in my daily nortriptyline. She says all of that SOMETIMES backs down a flare. (I know many people say one low-dose aspirin a day is as good as more, but I guess everybody's different.) If that doesn't work, she says I might try a Prednisone pack, if only to reduce the swelling from both EM and fracture.

I'll let you know how it goes. Meanwhile, thanks so much for past, present, and future advice. Even with this current flare, my EM isn't as bad as many of yours, and it's good to have Lyrica and Cymbalta as future possibilities. And Dragica, thanks for the reminder about non medical strategies.

Lynn

10

My case is a bit different since the EM didn’t follow injury. My surgery was 8 months ago and EM has been around for 4 years and hadn’t abated when I broke my leg. The damaged leg is in permanent flare insofar as it is always deep red and has nervy pains, shooting pains, stabbing, tingling from top to toe. When I have burning flares both feet flare together though, the burning pain the same in both feet but the damaged leg is much darker red. This hasn’t changed noticeably over the eight months.

11

That sounds truly awful, Nel. Did you (or do you) have a cast on the leg? I've seen comments by some people here who have had to endure casting, and I don't know how they tolerate it. But then, I don'l know how you tolerate something like that constant flare throughout your whole leg. I admire all of the moderators on this board -- you're a tough group.

12

No thank heaven Lynn I didn’t have a cast except for the 26 hours between the accident and the operation when they plastered from my groin down to my ankle but I was more or less out of it and remember nothing much except having a perfectly decent pair of trousers cut off me. The break was just above the knee and after the op it was heavily bandaged at first but the pain was so well controlled that I didn’t notice flares until they began to reduce morphine about 8 days later. There was a big tub of very wet wipes which I manage to appropriate and keep out of sight and I would drape wipes over my lower legs and feet and replace as soon we they began to cook! These things are all relative though; was such agony that the flares were merely an additional annoyance at that stage. I had no support for the leg other than the metal plate and 9 pins which have now taken up permanent residence.
I saw all kinds of weird and wonderful latticed supports on people at the fracture clinic in the following months which should be comforting for EMers.

13

Hi folks.

The osteoarthritis I have in my hands has been acting up over the past week. As if on cue re to this discussion, this seems to have led to a positional fault causing grating and subsequently uncontrolled jerking at the distal joint in my right thumb in the middle of the night. The pain became pretty intense for more than an hour. Concurrently, I experienced pretty bad flaring and burning sensation in my right foot which I have not had in the night for many months. And today, my right foot has been flaring non-stop. And the thumb joint is quite unstable, too. This is the first time that I have had pain in one area unrelated to my feet/legs seem to trigger EM flares. It certainly makes me wonder whether there is malfunctioning at the intersection of peripheral and central nervous systems for some EM sufferers (as Tizzy mentioned re CRPS).

Dragica