New to CRPS love to chat
Posted , 5 users are following.
Hi all. I fell July this year and had high ankle sprain it was very bad I thought it was broke. Weeks went past in cast boot non weight bearing but the pain just stayed the same week on week.. I am a fit person and I usually recover from everything very quickly in my life I am 39. This pain from the start was different. Ten weeks later the consultant didn't know why I was in so much pain he kept saying it was unusual. I attended Physio for a few weeks. Another two consultants have said it's CRPS.i am in agony 24/7. It's like throbbing ache stinging like a open cut wound. Burning but my foot feels like it's in s freezer ? The ankle bones around my foot feel like steal. My foot does like look like the typical CRPS I seen on google. It doesn't go red. But it does go pale. T doesn't swell but my god does it be stiff. I am doing Physio once a week. I am taking lyrica. I find it very hard to take. I can only manage 25-50mg per day as I am extremely sensitive to medication always have been. I have 3 young children. I have no patience wurh them. I wait all day for them to go to bed. Noise makes the pain worse. How is this possible !!! I feel like I am losing my mind.At the moment I am grateful I found this group.
Thx for reading.
0 likes, 14 replies
brenda_savvy
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I meant to type my foot doesn't look like the typIcal foot ....
vicky87059 brenda_savvy
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Hi Brenda, sorry to hear you have developed CRPS. I too am fairly new to the diagnosis and am finding it very difficult to come to terms with. I fractured my distal radius falling down stairs at work in may. I am unable to rotate my wrist now due to stiffness and have very little up/down movement. My hand swells daily and the colour changes from a range of white to purple/blue. Pain is fairly controlled with gabapentin, but does at random times rear its ugly head and I then have to resort to tramadol. It's the immobility that's getting to me. Can't work. Can't cook most hot food as unable to get in/out of oven. . Can't wash/dry my own hair as it has affected my shoulder too. I have just started to drive locally with adaptions to the cars handbrake. Having CBT therapy to try and help accept this debilitating disorder. Hope yours dampens down soon and you get some relief. Physio/OT for me continues and am awaiting CT scan to see if anything else is going on that might be able to be sorted to help my mobility and range of movements x
brenda_savvy vicky87059
Posted
glxpassat brenda_savvy
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I to sprained my ankle badly in July, and still dealing with pain. It radiates up my lower leg to my knee. I had been diagnosed with type 2 CRPS earlier in the year from a really bad broken leg. And had just had the permanent spinal cord stimulator placed for the pain from the nerve damage. Im wondering because I have CRPS, that my body isnt working correctly? I healed crazy fast having my stimulator placed, so I'm not sure whats going on?
Because of not working and having a really high deductible for health insurance, I wasnt able to go to the doctor to have them look at it. I simply cant afford things😓its frustrating as I want my ankle to heal, but until the new year (new health insurance, less deductible) I have to just suck it up.
Lucky for you things where diagnosed do early on! The sooner its diagnosed the better! Sadly I wasnt diagnosed until almost 3 years later. And the reason why is the severity of my injuries, and nerve damage. I was told it would take several years to heal. After a few years went by, then the tests to see what was going on, then going to a pain management doctor, concluding CRPS.
My stimulator has now given me "good" days and I'm able to walk without a cane anymore. Still have flares which is making it where I can't look for work. So life has drastically changed financially! I hope they are able to work with you; allowing you to have "good" days?
brenda_savvy glxpassat
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Hi Glxpassat. How did your day go today>
can I ask why do you think it will help I have been diagnosed early?
emma68737 brenda_savvy
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Hi Brenda,
I too have been recently diagnosed with CRPS and have a freezing cold left foot, it's sooo cold it's painful all the time and blue., swollen. I've been on crutches for 7 weeks, in a boot and cannot weight bear. The only relief I get is by warming it up with a hot bottle and cover with a soft fleece .... altough when it gets too warm it tingles, itches, throbs and is also very painful! I've seen 3 consultants and 2 different GP's, and 4 out of 5 said it was definitely CRPS.
I also have two children age 2 & 5 years old and yes it's a complete nightmare! I'm on Naproxen and it doesn't seem to be helping. I'm waiting for physio.
brenda_savvy emma68737
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emma68737 brenda_savvy
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Hi Brenda,
I just woke up on morning and couldn't walk, I had been gardening at the weekend but didn't think I'd done anything. Yes the boot is heavy and I have to rest after wearing it but I can't get any other form of footwear on due to swelling. Can't drive as it's in my left forefoot, can't use the clutch! I've been told to walk but it's so painful. I get random shooting burning flashes anywhere ... it's just weird. And it's worse at night. I'm usually pain free when I wake up and still in bed but as soon as my foot is lowered when I get out of bed it goes blue and the pain returns. I've gone from an active life to virtually housebound. There doesn't seem much help available here in north Scotland. Hope you're feeling a bit better, it's pretty hard to cope with when you have young kids! I feel like I shout at them too much as they can be very noisy and I know it's not them it's me, so I try not to. I take it the physio helped?
brenda_savvy emma68737
Posted
Hi there. Sorry only replying didn't get a minute with Xmas. I had 3 very bad days at Xmas. My husband was home so it was manageable. He goes abroad to work again in two days dreading it. I haven't been driving so the pain has dropped right down.
I have to drive when he goes back.
My job are expecting me back end of January I was told off the record. Not a chance I can return to work yet. Never mi d the pain my mental health is terrible.
The pain makes me feel horrible. I shout. I get angry. When I track it it's the pain days. I am usually a calm positive person.
So my anxiety is up to 90 now with thought of having to go to doctor to get more sick notes for work. My own doctor keep saying forget about work. Until this pain is ok u can't go.
How do I take these powerful drugs with young kids. They make me feel like a zombie. So angry today about it. 2017 suppose to be a new year and new chances to do well. All I see is doctor visits and this pain. Sick to death even talking about it.
If I win the lottery I would move to a warm country as the cold is my number one trigger
emma68737 brenda_savvy
Posted
Hi,
sorry you're having such a bad time, your doctor is right pain levels must decrease before anything even resembles normal or even contemplate going back to work. Luckily my pain levels have dropped but I've now had my husband at home for two weeks so he's been looking after the kids and letting me rest. I've bought an electric heat pad that I use to keep my foot warm when sitting and it's really helped, together with hot baths! I'm now managing to get around better on my crutches in the house. I've now been off work for 3 months but I know I need to get better before going back for the sake of my kids as I know I wouldn't cope or it could get worse. I'm now on amitriptaline just at night so I can sleep as well as the naproxen in the day and so far I'm coping... my biggest stress is being able to get my son to school as I can't drive at all or walk that far, it's so frustrating.
I hope you feel better soon xx
brenda_savvy emma68737
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Hey emma. Glad to hear u had hubby home. Is he back to work this week. I am dreading it. Where did u get heat thing for foot.
I hate baths as I like it in there but if water goes luke warm and getting out Jesus the cold catches it.
What is that drug Like that u take at night. I have s prescription to get it. But I haven't had the balls yet. I am dreading side effects as I am already drowsy with lyrica. I need to be able to get up in the night to baby if I have to. I am out of work5 months.
emma68737 brenda_savvy
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Hi Brenda, yes dreading husband going back to worknext week!I got a dreamland heat pad from John Lewis. The amytriptaline really knocks you out, not good if you have to get up for a baby, my LO turned 3years today and I wouldn't take it unless my husband was home ... within 20mins all I do is sleep. I'm not drowsy on the naproxen but it's not that good, just takes the edge off through the day. At least this week my pain is under control, long may it last! Just need to master walking again. I'm still waiting for physio on nhs.
Hope yours has calmed down a bit xx
emma68737 brenda_savvy
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Also forgot to say I've been using pure magnesium oil & spraying onto my foot & I think this may help too, you can get it from amazon :-)
eva96035 brenda_savvy
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Brenda,
I'm sorry to hear that you have developed CRPS, my son has it from football accident and he was diagnosed in June with this horrible thing. He's now suffering from an ingrown toenail that got infected and went through a course of antibiotics and we thought everything was doing better but only to find that it didn't do the trick so I have finally had to make podiatrist appointment which I was scared to do since anything and everything can cause a flare up and he has had a hard enough time with it but the doctor said if things didn't turn around soon that something would have to be done and the antibiotic ointment that I was using on his toe wasn't working and he has been having an CRPS episode for the past couple of week and has zero energy when it comes to anything and he says he feel's like he's an 80 year old man and he's only 16 and I know he's depressed with not being able to do the things that excited him most and we have had to take him outta school and put him in Hospital Homebound or that's what they call it where I am, it's just so hard to watch him like this. Please pray for my son as he needs the prayers, and with something this horrible only God can help all that have this terrible debilitating disease.