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?

Interested in more discussions like this? Go to the Chronic Pain group.

Hey @dave1986 welcome to Connect. Thanks for posting. I'm sorry to hear about your ongoing leg pain. Thankfully the clot cleared. You mention just accepting chronic pain. That is a big step. Do you feel content and confident that you and doctors have ruled out any and all possible causes?

I have attached a video that explains chronic pain that might be helpful to you.
https://youtu.be/8defN4iIbho
Do you mind letting me know your thoughts on the video?

REPLY
@rwinney

Hey @dave1986 welcome to Connect. Thanks for posting. I'm sorry to hear about your ongoing leg pain. Thankfully the clot cleared. You mention just accepting chronic pain. That is a big step. Do you feel content and confident that you and doctors have ruled out any and all possible causes?

I have attached a video that explains chronic pain that might be helpful to you.
https://youtu.be/8defN4iIbho
Do you mind letting me know your thoughts on the video?

Jump to this post

Hi @rwinney, thanks for the response and video link. My doctors are not too forthcoming with investigations but I am being persistent. I believe I have sleep apnoea (my wife has recorded me sleeping) I am just awaiting the results from the sleep study. All of my family suffer with a form of autoimmune disease and I am sure I suffer the same, I am a young male so do not fit nicely into a category.
Having watched the video, I can relate to a lot of the points raised. The point of pushing and crashing is exactly what I do, if I ever stop grinding away I suffer quite badly. Also, I used to be very active attending the gym, playing football but now I am hesitant in doing so. This is because in part I am in pain and following exertion I tend to crash severely and the pain is heightened. These fears were exacerbated following the forming of the blood clot. I am also being treated for anxiety following a bump in the road as a result of pushing myself for an extended period of time. I am more resilient now but I do feel a little down just because of the chronic pain and not knowing the cause.

Thank you for taking the time to respond, I really appreciate it

REPLY

Always good to vent. In the meantime, given how your GP handled your issue for so long I would suggest finding a new GP. Maybe a new doc, or at least a second opinion, may prove fruitful. Chronic pain is no fun so try to keep up the search for answers with the goal of a better quality of life.

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@whattodo

Always good to vent. In the meantime, given how your GP handled your issue for so long I would suggest finding a new GP. Maybe a new doc, or at least a second opinion, may prove fruitful. Chronic pain is no fun so try to keep up the search for answers with the goal of a better quality of life.

Jump to this post

Thanks @whattodo, it also helps venting to people that understand. I have actually changed my doctor now and the progress with investigations is a direct result of that. Unfortunately my previous doctor is still involved, with the electronic system in place it isn't necessarily my GP that reviews and responds.
I get the impression that I am just a nuisance and enjoy complaining of symptoms which is obviously so far from the truth. It took a lot for me to actually reach out and when I finally plucked up the courage and went with a list of symptoms to my GP, they read 3 symptoms and politely told me that it is all in my head and them telling that should be enough to be healed. I was refused pain relief and for a time I thought to myself what is the point, maybe I am making it all up. It wasn't until I suffered a clot that I was kind of taken seriously.
I feel bad for talking in such a way about doctors, they do a great job. I just feel if you don't fit in a nice category, you're seen as a malingerer (not sure on the spelling) when in fact I have had 4 days sick leave in 17 years and that was following an operation where I couldn't physically work.
Thanks for lending your ear, I will stop moaning now. I remain upbeat in the hope that this is all temporary 🙂

REPLY
@dave1986

Thanks @whattodo, it also helps venting to people that understand. I have actually changed my doctor now and the progress with investigations is a direct result of that. Unfortunately my previous doctor is still involved, with the electronic system in place it isn't necessarily my GP that reviews and responds.
I get the impression that I am just a nuisance and enjoy complaining of symptoms which is obviously so far from the truth. It took a lot for me to actually reach out and when I finally plucked up the courage and went with a list of symptoms to my GP, they read 3 symptoms and politely told me that it is all in my head and them telling that should be enough to be healed. I was refused pain relief and for a time I thought to myself what is the point, maybe I am making it all up. It wasn't until I suffered a clot that I was kind of taken seriously.
I feel bad for talking in such a way about doctors, they do a great job. I just feel if you don't fit in a nice category, you're seen as a malingerer (not sure on the spelling) when in fact I have had 4 days sick leave in 17 years and that was following an operation where I couldn't physically work.
Thanks for lending your ear, I will stop moaning now. I remain upbeat in the hope that this is all temporary 🙂

Jump to this post

So many people have similar experiences. Medical students, according to pain therapist and researcher, Rachel Zoffness, get no training in pain management. Dr. Zoffness actually suffers from chronic leg pain.

Is it possible that your gait is off from being in pain? Perhaps a PT would help? Also, graded exercise might be a consideration, so you don't crash and your brain and nervous system calm down.

REPLY

I am so sorry you are having pain for so long. Many of us have pain that can’t be explained, makes it difficult to function at times and people in our families and acquaintances can’t understand because we look fine, it’s the invisible maladies that are tough. No way to test for something if you don’t know what it is and it can’t be measured.

I have had neck pain for 6 months and am on my way to get an cervical MRI as we speak. I had to practically beg my PCP for imaging. I’ve been doing PT for years as I had pain on the other side of my neck that finally went away (thankfully) after a year. I kept doing the exercises since then and went back to PT again a couple of months ago.

Now I have head pain, my skull hurts, I get headaches and they have been daily for about a month or so.

I am also trying acupuncture. I have Sjogren’s Syndrome, an auto-immune disorder. It can affect many parts of the body and organs.

I will keep trying to find out what is causing the pain. I also have accepted my new “normal” and try to deal with the pain and disappointment and appreciate what I still can do.

I’ve been doing guided meditations and relaxation audios from You tube, it helps!

Good luck to you, vent all you want!

REPLY

@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!

REPLY
@dave1986

Hi @rwinney, thanks for the response and video link. My doctors are not too forthcoming with investigations but I am being persistent. I believe I have sleep apnoea (my wife has recorded me sleeping) I am just awaiting the results from the sleep study. All of my family suffer with a form of autoimmune disease and I am sure I suffer the same, I am a young male so do not fit nicely into a category.
Having watched the video, I can relate to a lot of the points raised. The point of pushing and crashing is exactly what I do, if I ever stop grinding away I suffer quite badly. Also, I used to be very active attending the gym, playing football but now I am hesitant in doing so. This is because in part I am in pain and following exertion I tend to crash severely and the pain is heightened. These fears were exacerbated following the forming of the blood clot. I am also being treated for anxiety following a bump in the road as a result of pushing myself for an extended period of time. I am more resilient now but I do feel a little down just because of the chronic pain and not knowing the cause.

Thank you for taking the time to respond, I really appreciate it

Jump to this post

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

REPLY
@debkl

So many people have similar experiences. Medical students, according to pain therapist and researcher, Rachel Zoffness, get no training in pain management. Dr. Zoffness actually suffers from chronic leg pain.

Is it possible that your gait is off from being in pain? Perhaps a PT would help? Also, graded exercise might be a consideration, so you don't crash and your brain and nervous system calm down.

Jump to this post

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 🙂

REPLY
@jetsetter

I am so sorry you are having pain for so long. Many of us have pain that can’t be explained, makes it difficult to function at times and people in our families and acquaintances can’t understand because we look fine, it’s the invisible maladies that are tough. No way to test for something if you don’t know what it is and it can’t be measured.

I have had neck pain for 6 months and am on my way to get an cervical MRI as we speak. I had to practically beg my PCP for imaging. I’ve been doing PT for years as I had pain on the other side of my neck that finally went away (thankfully) after a year. I kept doing the exercises since then and went back to PT again a couple of months ago.

Now I have head pain, my skull hurts, I get headaches and they have been daily for about a month or so.

I am also trying acupuncture. I have Sjogren’s Syndrome, an auto-immune disorder. It can affect many parts of the body and organs.

I will keep trying to find out what is causing the pain. I also have accepted my new “normal” and try to deal with the pain and disappointment and appreciate what I still can do.

I’ve been doing guided meditations and relaxation audios from You tube, it helps!

Good luck to you, vent all you want!

Jump to this post

Sounds like you have had a torrid time with it all. I also carry out mindfulness (not as much as I should), thanks for taking the time to respond and I hope you find a treatment that works for you.

REPLY
@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!

Jump to this post

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

REPLY
@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.

Jump to this post

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

REPLY
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