Chronic pain - no diagnosis

Posted by dave1986 @dave1986, Nov 4, 2021

Hi, I have been suffering with fairly severe leg pains for more than a year with no diagnosis to date. For an extended period of time my GP regularly told me that it was all in my head and to get myself to the gym.
A few months later I suffered from a blood clot in a superficial vein from half way down my calf up to the deep vein junction in my groin. I was told to let nature take its course but due to the pain I was having real difficulties walking. Eventually I was treated with Anticoagulants due to the close proximity of the deep veins (5mm). Good news - the clot cleared but the pain never really subsided. It has now been 12 months and my pains are really getting me down.
I was recently referred to the dvt team but fortunately there was no evidence of another clot.
I am just not sure what to do next, I honestly feel like just accepting this chronic pain and making the best of it.
I have been referred to haematology but they quickly discharged me with no investigation. I am also awaiting sleep clinic results.
2 reasons for me posting: I needed to vent lol and wanted to find out if people have experienced similar?

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@astaingegerdm

@dave1986 - Dave, did you ever see a neurologist? Pain in the legs could arise from the nerves, muscles, bones and connective tissue.
Neurologists can rule in or out certain nerve and muscle diseases. The pain could even come from nerves in the spinal cord. I assume you never had an MRI of your spine?
I'm just mentioning all this in case something applies to you. Don't stop complaining!

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I haven't unfortunately made the progress to a point of an MRI but it is on my list of potential investigations, just need to try and align the GP's list with my own. We have decided to wait for the sleep study results before deciding on next steps. I have been waiting for circa 5 weeks but was reminded yesterday that this isn't an unreasonable amount of time, it is just difficult to be patient with the constant pain

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@kenc

May want to seek out the help of a Pain Mgt. Specialist and perhaps see if there is any support group in your area.

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Thanks for the reply. During a very frustrating e-consult yesterday, I did put forward the idea of pain management. The conversation on GET with my GP was a result, I did explain that if this is the new normal at least for the meantime, I need the tools to self-help

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@dave1986

Thanks for the reply. During a very frustrating e-consult yesterday, I did put forward the idea of pain management. The conversation on GET with my GP was a result, I did explain that if this is the new normal at least for the meantime, I need the tools to self-help

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This can be a long struggle, but there is much that can be done.

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I’m sorry, what is GET? Thanks

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@dave1986

Hey, I took your advice and went straight back to the GP yesterday and enquired about GET. We had a good conversation and was forwarded some useful information on the treatment which I started to put it into practice today 🙂

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What is "GET"?

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@axeddie

What is "GET"?

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Graded exposure therapy

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@dave1986

Thanks for the reply. During a very frustrating e-consult yesterday, I did put forward the idea of pain management. The conversation on GET with my GP was a result, I did explain that if this is the new normal at least for the meantime, I need the tools to self-help

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Since your normal route for an answer hasn’t worked maybe consider acupuncture, a rehab medicine physician, biofeedback? Try thinking outside the box!

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@dave1986

Thanks for the reply. During a very frustrating e-consult yesterday, I did put forward the idea of pain management. The conversation on GET with my GP was a result, I did explain that if this is the new normal at least for the meantime, I need the tools to self-help

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Graded exposure has helped me with light and sound. I continue to use this technique in other ways too, it's a great self help tool. Good luck with it.

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@jenatsky

Since your normal route for an answer hasn’t worked maybe consider acupuncture, a rehab medicine physician, biofeedback? Try thinking outside the box!

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Love this!
Outside the box = problem solving.
Chronic pain requires problem solving. Don't give up and give in, find ways to work smarter not harder.

Great suggestions @jenatsky

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@jenatsky

Since your normal route for an answer hasn’t worked maybe consider acupuncture, a rehab medicine physician, biofeedback? Try thinking outside the box!

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Absolutely - "thinking outside the box" - if the box is what we think of as traditional medical treatment - because chronic pain is like a multi-headed beast that is trying to take over one's life. I found the solution(s) are different for each person, and not every effort is going to meet with immediate success, the key is finding the pieces that work and pursuing them diligently.

One very important piece for me is finding endeavors that distract me on days when the pain wants to take over. If I can't garden, I stretch or walk, I quilt or sew or plan my next project, or even get lost in a good book... One friend gets out and walks her dog, taking in the sights and sounds of the day, and loosening sore muscles... Another sets herself 2 tasks for the day, and makes sure she does them, then anything else she accomplishes is "even better"... And all of us watch out for one another.

Sue

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