Chronic undiagnosed pain : I am in constant... - Pain Concern

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Chronic undiagnosed pain

Alanwilliam
Alanwilliam

I am in constant general pain and do not know where to turn for help. I have had numerous tests by dermatologists, neurologists etc. I have had regular blood tests and can find no answers to my misery. I have been told it is due to anxiety. I agree I have suffered from anxiety for many years but can extreme anxiety really cause so much distress

36 Replies

Hiya Alan,I sympathize with your situation.Its pretty similar to mine,I've had a lot of stress in my body for as long as I can remember but I've not got a tune out of the medics.I now have a lot of indifference towards them.My next move is to bypass GPS and contact pain clinics,but I'm not gonna pursue this till covid quietens down.Maybe you can try summat similar Alan,I've always thought that scans,x-rays and the like are not 100%.With me,I've had a bad back for about 11 years,resulting in a lot of balance issues,so many falls and blackouts.The 2 scans came back clear so that's where I'm at.I hope you have more success than me,just think of all the people out there being misdiagnosed also.I hope your pain eases Alan and I hope you get a much better quality of life real soon.

Alanwilliam
Alanwilliam in reply to Jjflash

Hi Jjflash. Thanks for taking the time to reply. As you say so many people being misdiagnosed. I feel that in spite of all my tests something is being missed. Doctors don’t have the time or inclination to go beyond the basics. Hope your problems ease before too long. Alan

I have had physical pain for over a year before Lockdown. I had a nasty fall at home and I have been in agony with a damaged foot ever since, I now have a limp, due to not having the correct care at hospital. I have since seen a specialist a year later and I am still in agony, the specialist told me I was suffering from Complex Regional Pain Syndrome and that there is no cure for this because it is hard to diagnose, I don't know why because I was diagnosed. There are no tablets for this, it is just something that I have to live with. If I was you I would try and speak to your doctor to see if you might have this condition. I read up on the NHS site and typed in Complex Regional Pain Syndrome and I found out a lot more from this site than any doctor.

Alanwilliam
Alanwilliam in reply to Imagine1

Thanks for your reply. My GP says chronic pain is very common and he sees it all the time. It is due to a misfiring of the nervous system. It is too complex to investigate and that I should just take anti depressants to relieve it. My experience of anti depressants is not good and I fear long term use. Alan

Imagine1
Imagine1 in reply to Alanwilliam

I don't know why the doctor is giving you anti depressants for Chronic pain? I live with Chronic pain and I am not on them. Obviously if you are very stressed that is when your doctor will give you them but it won't help your pain. There should be medication that people could take to help with Chronic pain because a lot of people experience this in their life.

Timmer79
Timmer79 in reply to Imagine1

Antidepresants apparently help nerve pain- they've tried to give me the same....but it hasnt worked. amitriptyline has been the best so far, but im allergic to alot of medication. (must have been bad in my past life haha)

Sorry to hear both aren't well...chronic pain is an unfortunate circumstance we find ourselves in...no luck getting a GP to talk through all of my problems...they want to talk about 1 issue at a time...im part way through seeing someone privately to try and get some answers.

ive had blood tests done through thriva also, and tried to do a lot of research, but cant see to find any answers.

mine is back pain, could be sacriolic joint or muscular, no-one knows and im yet to find someone who cares unfortunately. had full spina MRI, nothing except a bit of edema on sac joint.practically my whole body aches at different times....what symptoms do you get Alan?

Alanwilliam
Alanwilliam in reply to Timmer79

Hi. I get chronic burning pain. Tingling skin and sensations like my skin is being sandpapered. Thanks Alan

Imagine1
Imagine1 in reply to Timmer79

I always feel guilty contacting my doctor about my pain or anything else. There is nothing they can do about Complex Regional Pain Syndrome which I have and it is difficult to diagnose.I didn't know that Anti depressants helped with nerve pain? Thank you for your kind reply.

Gapapentin is not addicting and it works for many people. You have to take a low dose and ease up slowly adding a higher dose . It is a med for epilepsy but at low does works for chronic pain. I am taking this med for nerve pain. So far it has helped a little but I have a friend who was screaming in pain and he takes this and said it was a miracle for him. He no longer has any pain. I was hoping I would have the same result but.....I have not felt much if any relief so far on this med. Google it and don't be afraid when you read all the side effects. They have to be listed. My friend who is a doctor says he has many people taking this and they have no side effects . IT IS IMPORTANT to start out slow with this med to avoid and side effects,😀

Hello Alanwilliam, Anxiety can cause lots of unwanted symptoms or make the ones you have worse. However your pain could be any number of things , which can only be detected with basic tests like X-rays, blood tests etc. Relaxation exercises can be beneficial and found on sites like u tube. Even if you have a diagnosed illness anxiety can make it worse so you need to try to relax doing the things that help you . Remember pain causes tension which causes muscle pain in any part of the body. Do you have any other symptoms or have you tried simple things like heat pads for the pain or herbal remedies ? I had acupuncture and attended a gym in order to establish it was not just in my mind these things made the pain worse in my case. I am unfortunate to have two types of Arthritis as well as a lung condition . So there is never a simple answer but I would highly recommend you do research into your own pain as it could even be food triggered. Coldness is another one that makes pain worse. Keep a record of all symptoms , plus pain highs & lows so you can tell the doctor or a consultant even if they are convinced its anxiety. Speaking from experience its common to say things are fine by doctors to reduce your anxious state but it often makes it worse. Example I had a blood test and my doctor said it was fine when in fact it was not as my letter & hospital records show a certain component was three times the normal level which mean't I do have an illness but it is not a common one. So have a good think and decide what is best for you. The chat side of this site can be very helpful. Stay Safe & as well as can be. Maybe we might chat again in future.

Hi Katie. Thanks for your reply. You have clearly taken time to construct it and have come up with some good suggestions. I will take a look at your ideas and give them a try. Thanks again. Alan

You are welcome

I have chronic unrelenting pain for the past 4 years from psoriatic arthritis and having constant pain can lead to anxiety. I don’t understand why people and (doctors) don’t get this.

Alanwilliam
Alanwilliam in reply to Batty1

Thanks Batty. So sorry to hear of your condition. My GP believes my pain is due to anxiety which is the root cause. I have great difficulty with this theory but seem to be defying all attempts at investigation. I probably have no choice other than to give anti depressants a go. I greatly fear their long term use though. Alan

Can you give more details of where your pain is, what it feels like and how it affects your daily life and sleeping?

Hi Konagirl. I get generalised chronic pain in my face, neck, arms and legs. It is like someone sandpapering my skin. It comes and goes but I have it almost every day. It makes my life a misery. I struggle to accept that it can be due to anxiety. I have had numerous tests for neuropathy, small fibre neuropathy etc. All blood tests come back normal. I have a reluctance to take anti depressants but have no choice

Have you tried taking turmeric? What about Boswellia ? I have nerve injuries and they help me.

I use passionflower to calm my Sympathetic nervous system. It helps with anxiety and pain to.

Many thanks for your reply and your help. I am willing to give anything a go. I have tried turmeric already but will definitely give your other suggestions a try. Thanks again. Alan

Hi Konagirl. I have just looked at Holland and Barrett for Boswellia. Is it in tablet form that you take. Thanks

Yes. I use a product made by Medi Herb in Australia. It’s a tablet.

Hi Konagirl. I have just looked at Medi Herb Boswellia and got the shock of my life. It is £153 for 120 tablets. At 4 a day this is just one months supply. Have I got the right one. Thanks

I use three a day...morning, afternoon around 3:30 and at bedtime. Yes, these effective supplements cost money but they rarely cause side effects.

Wow!!

Batty1
Batty1 in reply to Alanwilliam

Alan, does it feel as if you have a sunburn without actually having a burn?

Alanwilliam
Alanwilliam in reply to Batty1

Hi Batty. Yes I have constant burning type pain. At other times it is more like tingling and as if my skin is being sandpapered. Thanks Alan

Batty1
Batty1 in reply to Alanwilliam

You won’t even believe this .... ME TOO!

Im going to a neurologist on April 16th again because I have had this burning skin sensation over my entire body for 2 years but it really causes me grief to the tops of my feet and makes wearing socks and shoes or standing almost unbearable.

little of my history maybe it could help.

1. No thyroid

2. Psoriatic arthritis (diagnosed 2018)

3. Psoriasis

4. High Cholesterol

Ive been tested for diabetes so many times, always negative and my Rheumatologist, Endocrinologist, Functional Medicine Doctor and Neurologist can’t tell me why my skin burns ..... its like having a sunburn without the red skin.

I can’t tolerate it anymore!

Alanwilliam
Alanwilliam in reply to Batty1

Hi Batty. I hope you get some answers from the neurologist. I went very recently and paid £250 privately. He took a medical history, did a few basic tests like close your eyes and touch your nose and that was it. He said he saw no reason to conduct any further tests. The problem I present to all specialists is that I have no underlying health conditions. For that reason everything is put down to anxiety. It is hard to believe that anxiety could give me so much pain, burning, tingling etc. It hits me even when I feel relaxed. It looks like I have no choice other to accept it and take the anti depressants. The thought of taking them long term terrifies me.

Batty1
Batty1 in reply to Alanwilliam

If you haven’t you should consider doing a private testing for a complete thyroid panel like from medicheck or one of the other labs where you can pay for what labs you want on your own .... TSH, FT3, FT4, T3 and antibody testing...... and if you do this make sure to do it first thing in the morning before you eat or take any medication.

I only say this because I never had this burning skin sensation until I lost my thyroid which leads me to believe its hormonal in nature but the problem I have is convincing my doctors (endocrinologist) mostly because they never ever want to chalk any of your issues up to being caused by thyroid and if you don’t believe me just read the post of the million of other people here on UK with thyroid health related issues. Have you looked up burning skin sensation lots of info on the subject and thyroid disease is always on the list as a possible cause!

I will definitely let you know what the neurologist says which Im positive it won’t be any more then 2 yrs ago when I went.

Alanwilliam
Alanwilliam in reply to Batty1

Hi Batty. Many thanks for your reply. I have just googled thyroid issues and didn’t realise how complex and important an issue it can be. I am sure it has been checked in the past by my GP on numerous blood tests. You also feel you are becoming a nuisance and telling them their job when you question these things. In spite of this I think I need to check this out more thoroughly. Thanks for your help and good health to you.

Batty1
Batty1 in reply to Alanwilliam

The problem with doctors testing thyroid for issues is they only test TSH and that’s nothing more than a pituitary hormone and really doesn’t help in diagnosis a possible thyroid problem.... Sorry but your not being a nuisance when you have a crazy burning skin sensation that really no one would even understand it unless they experience it .... seriously horrible annoying affliction to suffer with and its not anxiety induced and thats just a throw away diagnosis for every time doctors can’t find answer to a patients problems its just like a women always being told your issues is related to menopause, seriously sad.

If I were you I would privately test all my thyroid levels including the antibodies and just see if my thyroid is actually functioning properly.

Im not saying its your thyroid Im just saying you really don’t know since you were probably not tested properly.

Only thing that can come from the blood test is yes you have and issue or no you don’t.

Konagirl60
Konagirl60 in reply to Batty1

It’s formication.

Batty1
Batty1 in reply to Konagirl60

I don’t have the sensation of insects crawling on me I have what feels like a bad sunburn without the actual burn. Alan may feel like he has insects crawling on him but he also says it feels like a burning sensation.

I was also on antidepressants and that 100% did not solve my issue.

Hello Alan, I know you haven't been diagnosed with arthritis, but there is a relaxing exercise programme you could join called Versus Arthritis with Leon and his mum Janet. I feel your pain.

Hi Aoibheann. Thanks for your reply and kind words. I will look at your suggestion. Alan

Hope you get comfort with your pain! I have itching legs from diabetes, but no general pain, could be some medicine you have taken, maybe? Wish you good health!

Alanwilliam
Alanwilliam in reply to Drago69

Thanks for your reply Drago. Hope you get better soon

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