Ok, whole new bag of fun this weekend - any advice or thoughts very much appreciated as ever...

I have CRPS in my left side. Started in my L leg post-knee arthroscopy, spread to my foot and whole leg, then to R foot. In last few months, symptoms developing in my L arm, increased pains and sensitivity etc in my L arm in last fortnight.

A couple of months ago I had a few L side chest stabbing pains, each about 5-8 mins apart and more if I breathed deeper. I felt a bit wobbly, but they passed, and I put it down to indigestion etc.

On Friday I had a similar thing when my husband was here, and he thought I should get checked out so we went to the local small hospital. The reception nurse told me off for not dialling 999, but the doc I saw was lovely. I had an ECG (normal) and she did some neuro checks and I explained about the CRPS. She didn't know it (story of our lives) but grasped the idea quickly and asked intelligent questions. She thought the pains were due to spasm of an intercostal muscle, and said I only needed to panic if the pains were much more frequent, I struggled to breathe, nausea, clammy etc.

Yesterday I was at my parents for tea and towards the end of the meal my upper back tightened up in spasm and I couldn't move for a few minutes. My sister rubbed my back (ow) a bit but was just hurting me too much so she stopped. It eased over the next few hours but not something I've had before.

This morning I woke lying on my L side. I straightened out and felt a stabbing pain in my chest, L side but more over my heart than to the side like before. I waited for it to go like before, but it just kept going, every second or so a new stab of pain. I couldn't move, the pain was so intense, I was breathing shallowly because of the fear, and just felt completely panicked. My husband had been just about to go to work, so lucky he was there. After a few minutes of hoping it would go he phoned 999.

I can't describe the fear, but I'm sure some of you know it. I've never really thought I might die before, but I thought it today. My kids were at home, the youngest about to go to school, it was crazy.

The ambulance men were amazing. They did an ECG which was fine, and by then the pain was easing off and I could talk a bit easier. We explained the CRPS and after all their checks he said he thought it was more likely to be connected to that and some kind of muscular spasm/pain. He said if CRPS could affect any tissues and I had it in my L side, then it wasn't beyond possible for me to have the symptoms in my heart or any other tissues around it.

I rang the doc as requested and spoke to a stroppy GP who made me feel like a complete time-wasting idiot (I already felt like that), and basically it's been logged on my records. She didn't want to see me.

We're going on holiday in two weeks, to a small island. I'm not sure what to do for the best in terms of meds, when to panic etc. Should I push to see my GP before I go? Do I just have to accept this kind of thing as a new CRPS symptom? Do I get checked every time or just wait and hope that it goes?

I really hate this damn condition

Bram.

I've had very similar things happening to me recently. The first time the stabbing pain happened, it took my breath away and I became very lightheaded. I thought I was having a heart attack too b/c I was sweaty, nauseous and felt I was going to pass out. I took a baby aspiring just in case. Now this is slightly humorous looking back but fairly stupid. I currently don't have any health insurance and so my thought at the time was if I went to the ER and it was anything cardiac related, the bills could be HUGE and I didn't want to burden my husband with those. I feel like I'm enough of a burden as it is. I decided that it was okay with me if I died of a heart attack there and then alone and just go quietly into the night. With that said, if I had insurance I would have gone to the ER. (Pretty sad isn't it?)

Since that episode I've had a number of stabbing pains in my chest and back. (on the left side or in the center.) Sometimes they are related to movement and sometimes not. I have come to the conclusion that they are from crps. I think I am developing dystonia b/c my upper arms, thighs and back are cramped up. So when I move or am in a cramped up position, I believe it's my muscles or cartilage sending out these sharp stabbing pains. If I touch the top of my chest, I do have muscular or cartilage discomfort that I don't feel in other areas.

Once I get my insurance back (long story) I plan on asking if I have dystonia but also asking for a cardiac work-up. I have had Ketamine infusions and if I am recalling correctly, the ketamine can affect the heart.

Just one more thing this disease throws at me.

I've been having similar Bram, not as bad as yours though. I've been quite scared by them as I've had a lot of dizziness and fainted a few times recently too. If the docs think it's spasmodic, have you got anything for that? Is there anything that seems to set it off? Have you had your blood pressure checked (I'm guessing yes lol)? Sending hugs cos I can imagine how scary it was xxx

Bram,
Yes. Go see your GP. If you can't get in to the GP, get in to an Urgent Care facility. This new symptom sounds very scary. You should keep getting it checked out each time it happens. KathyUK and Reluctant, this goes for you two too. Don't mess with your heart! You do matter. Good Golly!

I have spasms of my esophagus. Not hiccups. When it happens, the pain in my chest is very real, strange and scary. I do have Dystonia and severe spasticity. I have a baclofen pump and I take oral bac when I need extra. Until you know for sure that your new symptom is something like this, you don't want to mess with it. Get yourself back to the GP.

I hope it is something that passes.

Thanks so much Kathy, Reluctant and DJ, good (ish) to know I'm not alone with this.

Yes, I've had my BP checked twice this weekend, about 140/70 this morn, lower on Friday. O2 sats 100% this morn, ECGs good. All reassuring, but it still felt like someone was twisting a knife in my chest

Every now and then I feel a twinge of something in my chest, but it goes. My arm hurts a fair bit these days, I feel like my left side is just wrecked by this. These muscle cramps and pains are a whole new thing in my torso. Yet ironically I've recently (bedore this charade) been able to do more and been happier because my leg felt a bit more stable... It's a cruel, cruel condition.

I don't know what to do. I'm going to try to see my GP before we go away, but I doubt he can do anything. Suppose if it happens again I'm just going to have to keep breathing and hope to goodness it passes quickly... I'm beginning to wish we'd booked a week down the road in a hotel on the mainland!

Hope you all feel ok today, sorry you are dealing with so much. I appreciate you taking the time to respond, means a lot

Bram

I know this might sound crackers, and I certainly don't want to downplay chest pains in any way but my son has a brachial plexus injury and that branches from the neck to the armpit and across the chest like a web. Could your CRPS be effecting that?

I have no idea! As far as I'm aware I have no injury to any nerve apart from the one in my knee. If this nerve you mention (I'll have to look it up...) is affected by the CRPS then it is from the spread.

Would improving my cardiac fitness be a good idea or more likely to bring on an episode of the pain? Also, I normally do exercises every day and I'm a bit scared to do them now in case the stretching etc brings it back. On the other hand I suppose I can't just sit here and vegetate oh the joys...

Bram.

Oh my Bram! How scary! I'm so sorry you are going through this. I'm afraid I don't have any advice other than get to your GP and hang in there.

Hi Bram,

So sorry to hear this. I have had neuro pain/ shock like symptoms in my torso, but they were like the other lightning like strikes I have felt elsewhere. I think what you are describing is different from what I have felt and therefore I am unsure what’s going on with you. If you have the ability perhaps a good work up with a cardiologist would be a good idea, if for no other reason than peace of mind to know what you’re dealing with and perhaps put your mind at ease. I have read that it is possible for your heart to become involved, but I pray this is not what is happening to you.

If nothing else maybe the holiday you and your family are taking will prove to be relaxing and help your overall condition. I hope you feel better quick and get some answers. Sorry that I couldn.t be more helpful.

I'm happy everything checked out for you! My partner was diagnosed with viral myocarditis a few years back. her ekg was fine but they found it on the MRI. It might be something to look into or bring up.