Just been "diagnosed"

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Hi all,

Have just visited the Doc after suffering in silence for almost 3 years. 31 year old female.

Symptoms started around the time I became a chef 3 years ago and I'd say I have an "attack" every month or so. I've been woken in the night only twice but they certainly were the worst attacks.

I've tried to figure out triggers but it's too hard to pin point. Things that set it off are:

During period, sometimes.

After intercourse, sometimes.

Leaning over a sink and washing Octopus, sometimes... You get the idea haha.

My attacks are slightly gradual, I can feel it come on before it hits, a feeling of needing to go with a dull ache, followed by such intense pain I go white and have almost passed out. I'd say it certainly feels like a cramp of sorts and I'm uncomfortable for a few hours after. My coping mechanisms have been immediately taking pain relief and breathing through it. I've also tried stretching but because they never last more than say 5 minutes I'm unsure of what actually works. The longest I've had it would be about 10 minutes but felt like hours at the time.

I wanted to ask other suffers, because by God do we suffer: does it get worse as time and age goes on?

It's slightly ruining my life in the sense of most attacks happen at work and can't tell anyone what's going on, well, I don't want to. I do cope I suppose but I'm so fearful it will get worse and more often.

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4 Replies

  • Posted

    Hi

    i also started getting this on my early thirties. My gp knew what it was and assured me it was nothing sinister but I really dreaded feeling the onset of an attack on waking in the wee small hours. I am now in my late fifties and have noticed a decrease in the number of times I get it. I take amitryptiline. Which is an anti depressant and also for neurological conditions which is why it helps with this. You do need to experiment with the dose as it can make you groggy. I also take magnesium an hour before bed. Coping with an attack? Well I stretch that area by crouching on the floor and spreading my legs out. Also, the punch technique as described by others on this forum can be effective. I also find walking it out helps which is difficult in the middle of the night! But sometimes it happens in the day and moving around shifts it quickly. When I first saw the gp he told me to try glyceril trinitrate tablets which are generally used for angina. It worked for a while but they go off quickly so you have to keep buying new bottles and you don't always remember and then you have an attack and you realise you've not got any new tablets. If u use old ones they give you a headache!

    you will get lots of advice on here, so good luck!

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    • Posted

      Thank you.

      I'm looking for lots of advice and feel I've already got a great start.

      I suffer with quite a few muscle problems, such as tension and cramp and I also have mild arthritis. Is this common in other sufferers?

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  • Posted

    Hiya Green!,

    Be glad urs last 10 mins tops. Mine come once every 6 weeks, middle of the night. And mine are the intense ones like it's to where the pain is so unbearable I can't do anything but scream in pain, & on numerous occasions I wake up on the bathroom floor because the pain knocks me unconscious for a brief time it's so intense. My episodes are always a minimum of 1.5 hrs. Most times 2 hours straight at that intense pain level of excruciation.

    I'm 42 yr old male that has had this monster since I was 12 yrs old. Same intensity since it began. To answer ur question, mine personally has gotten worse as I've aged, as far as frequency of attacks.

    Stay hydrated to the best of ur ability, as dehydration is a major trigger for my episodes. Our neurotransmitters can't transmit signals to our muscles well when we aren't hydrated well. That's where we get Charlie horses in our muscles. Leg cramps, foot cramps, & in our cases rectum muscle cramps

    Cory

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    • Posted

      Hi,

      Thanks for your advice, which I have been following. I've certainly been on top of hydration. Which has stopped my other cramps and my attacks are less frequent. I've found the Punch technique to be my relief choice. Works everytime.

      I hope it continues to work!

      Must say, bless you. You really do suffer and I genuinely feel for you. I've given birth and this, I can promise you can be worse when it's a particularly bad one. I must say the the breathing I did before I found the Punch technique was what I did during labour and it does help, minimally.

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