Frustration/Waiting game of DVT - advice?

Hello all!

I should probably start with giving my DVT testimony because I have read so many on this website and I'm really thankful I can finally relate with people sharing the same illness. I'm 24 and things were going quite smoothly. I had a decent job in the mining industry which involved flying regularly - away from home for 2 weeks at a time with a one week break afterwards. There's been a bit of lower back pain these last couple of years after I injured it lifting weights before going on holiday in 07, its never fully healed and is a constant pain in the ass because I'm pretty tall at 6'4. Whilst on holiday on my week off I started to notice a little bit of pain down my left leg which got worse with the more walking I did. I kinda shrugged it off for 3 or 4 days and just took a few nurofen painkillers each day, thinking it was stiffness or soreness from work or jogging or something like that the previous week. I eventually sought help from a doctor, he examined me and I was diagnosed with 'a pinched nerve in the back,' he gave me a prescription for Valium (5mg), Tramadol (50mg SR), and the anti-inflammatory Voltaren tablets. 2 days later I was having an afternoon valium nap and DAMN my calf cramped, swelling to at least double the normal size. Was driven to the hospital and was diagnosed there with DVT. The next ten days in there I've never been in so much pain in my life. Coumadin, Heparin injections, oxycodone pretty much my meds. I'd have to say, despite great efforts from a lot of family members coming to visit me in there, the thoughts circulating around my head at the time weren't great at all. OK I lived through it thank god, but what was I doing in there, what was happening, it was all a huge shock and I constantly found myself wondering where would i go from there.

3 months down the track here I am, not exactly a picture of health but alive nonetheless. I've been struggling for regular routine with medicinal, exercise, eating and sleeping habits/patterns. My target INR is 2.5 - 3 and the amount of coumadin I take generally only fluctuates between 9 and 10mg, which I've been advised I'll be on for the next 9 months atleast. I'm also on Tramal SR 150mg tablets twice daily along with a heap of supplements magnesium, fish oil, glucosamine etc. I don't know whether it's the warfarin or tramal or both which cause involuntary muscle spasms/undesirable twitches all over my body in different places ALL the time - does anybody know why this is happening? It never happened pre-DVT. I can tell when my INR is too low or too high because my body is all out of whack and I don't feel right at all, but lately I've got a handle of it.

The clot was quite extensive in the leg from the left common iliac vein to the popliteal vein and involvement of the majority of the paired posterior tibial and peroneal veins. Further thrombus within the gastrocnemius veins, soleal sinusoids and the short saphenous vein. Thrombus within the pelvis also in all the iliac veins.

Does anyone have a similar situation to mine? would love any advice, feedback. I've been given a 6 - 12 month recovery estimation by my Haemotologist Doctor and really just want to put myself on the right track to recovery and beat the illness. I've been swimming once or twice a week about 400m each time and find i have to go really slow with the legs to avoid swelling (mainly beneath the knee). i try to walk twice a day (when i can find my ipod!) about 20 minutes each time, any longer and i start to get pain and swelling. Exercise bike recently - which i think has been effective. I bought a Whole Body Vibration machine last year (I call it 'the wobbler') which I stand on twice a day, 10 mins each time. I feel good after I use this.

This is such a frustrating position to be in because I'm too inpatient to walk around the block or on the grass oval. All I really want to do is just sprint as fast as i can or go and play a game of basketball or football and go to the gym and all that social stuff.

This is a great website and i feel like I'm involved now.. Thanks for listening and I look forward to hearing from you - joey

Thanks for sharing Joey! All I can say is that it does eventually get better. Ten years later, I still sometimes experience pain or swelling, but most days are good days.

I also have muscles spasms sometimes (although mine are not constant nor are they really noticeable). It could be the medication or it could also be, my doctor has told me, some kind of permanent nerve damage from the DVT. If it is really a nuisance, talk to your doctor about it. There are some specific tests that can be done.

I've just been diagnosed with PE from DVT, funny story (not) went into hospital with pnumonia came out with PE after various test (CT Scan). Finding it hard to come to terms with it, don't know what to expect, on warfrain for 6months and pretty much as scared as can be, glad to hear the story from Joey and LLR1917's advice, seems I am not alone, I hope you both get things sorted, Thank you