when are tests / scans enough? [Archive]

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busterrufus

30-06-19, 13:18

I have had physical symptoms for over 10 years. Drs have not found any significant abnormalities after several scans and tests over the years. I have severe anxiety that physical illness is the cause of my physical symptoms. It seems logical to me even though I also know that my anxiety also causes symptoms.
I cannot accept that there is nothing seriously wrong with me physically. Over this time I have had 2 colonoscopies, 2 endoscopies ,2 abdominal ct scans ,3 mrcp scans and 6 abdominal ultrasounds. when is enough testing enough?
I have had psychological help and medication too.
Is there anyone out there similar??

p.s.the scans have always come back
"no abnormality"
"no significant abnormality"
or "essentially normal"
the last two wordings set alarm bells ringing with me immediately

Fishmanpa

30-06-19, 13:54

You do have physical symptoms but they're due to anxiety. What they're seeing is consistent with that. I.E. - 'Except for the things we see that are consistent with digestive issues due to anxiety, we find no significant abnormalities and everything is essentially NORMAL'

Positive thoughts

Scass

30-06-19, 14:05

Essentially normal is the same as normal!

I think you’ve probably had enough tests now, perhaps it’s time to invest the same effort and time into seeing if it’s anxiety?

Sent from my iPhone using Tapatalk

busterrufus

30-06-19, 14:22

thanks both of you.
believe me Scass i have. I had been on a mental health ward for a month. Under care of psychiatrist fot over a year at the start. Had cbt ,anxiety management, mindfulness courses, still on medication, had" recovery "support for 4 years. I'm not a beginner at this by any means. However I have pain and other symptoms almost daily which stops my life,so no one has ever been able to convince me that its totally a psychological problem. The NHS is in a terrible state tho and i think if you have anxiety drs will ascribe nearly all symptoms to it regardless of the number of times i explain my physical symptoms which feel to me( and always have done) like I have a serious medical issue.
p.s. I truly do not understand how "essentially normal" can mean the same as "normal". Please could you help me with this? Also the radiologists would have no knowledge of my anxiety

BlueIris

30-06-19, 14:46

Essentially normal is just a stock phrase, it means they don't see anything to cause concern or require treatment.

It's how these things have been phrased since forever.

Dying_Swan

30-06-19, 15:04

Hello. Sorry you are having a hard time. How long has this been a fear? Did the anxiety and physical symptoms come at the same time? What are the physical symptoms? It sounds like you've sought lots of support, which is great. Did anything ever help? Was all the help due to health anxiety? Sorry for so many questions.

I guess your original question about "how much is enough?" is difficult to answer. There will always be a degree of uncertainty when it comes to our physical health. Actually, with most things. For me, coping with uncertainty is one of the hardest aspects of anxiety to overcome (I have GAD, not HA). Realistically though, none of us can ever be sure that we don't have anything at all wrong anywhere, we can only rely on what our doctors are telling us. Those doctors who have years of training and experience and who really don't want to get it wrong. Sure, occasionally they do get it wrong, but it's unusual.

I had a 24 hour tape years ago which was "essentially normal", and I've never understood it either, but here I am many years later without anything terrible having happened to my heart yet. I think if it's "essentially normal", take it to mean normal. They may just have found the slightest blip somewhere but have decided its insignificant. More likely though, it's just standard terminology. The radiologist may or may not know about your anxiety. I wouldn't take it for granted that they don't.

Are you getting any psychological help at the moment with all this?

busterrufus

30-06-19, 15:04

Thanks Blueiris
It will probably be used in case they miss something then. Thats what I was afraid of .

Dying_Swan

30-06-19, 15:09

Thanks Blueiris
It will probably be used in case they miss something then. Thats what I was afraid of .

I don't think so. They wouldn't use the word "normal" if they were in doubt.

busterrufus

30-06-19, 15:33

BlueIris

30-06-19, 15:48

Forgive me, but while you have a lot going on, none of it sounds serious. Annoying, yes, but the only thing that seems to have the potential to negatively impact on your life in and of itself is the anxiety.

busterrufus

30-06-19, 16:06

Blueiris

Its serious enough to have me retire due to ill health, have to lay down and not leave the house for weeks , not go on holidsy or social events, throw up for days, go to a and e because of severe abdominal pain , miss precious time with my grown up children an little grandchildren, regularly contemplate suicide and so on...
How the heck can constant severe pain not severely affect ones life. Its bad enough without the anxiety. I was hoping not to have to explain that much. I realise many people live with constant pain. But I don't even have a diagnosid. I cannot accept that anxiety is the cause of my physical pain.

BlueIris

30-06-19, 16:13

I'm sorry, I know this must sound cruel but I know from personal experience that health anxiety can be a life limiting condition.

I don't think I want to argue with you any more because I don't want to be that person. I hope you find the peace you're seeking sooner rather than later, though.

Dying_Swan

30-06-19, 16:39

Thank you DS
Yes it statrted 9 yrs ago with physical symptons snd they caused severe anxiety.
I have upper abdominal pain, back pain nausea vomiting . Sometimes indigestion and occasional diahrrea.
About 3 yrs ago groin and low back pain started too, and pain and twitching in legs.
I am fatigued all the time.
Along with this are symptoms that I do accept may be caused by anxiety such as agitation, restlessness, inability to relax, dizxiness, feelings of terrible doom, sweating, bitter taste in mouth, burping, dizziness and many many more.
Yes I do have severe anxiety, but I feel as if its justified anxiety because I know I must have a serious physical problem, if you get what I mean. I have suffered with anxiety from being a teenager, im 64 now.
I have always known we can never be completely sure we have nothing wrong with us, but I know I have something wrong with me because I still have the pains etc even after repeated tests.
Im distraught about it at the moment as I see no happy end. After consultjng several drs , even a private one my symptoms remain and a day without them is extremely rare.
Sorry to sound so negative, but that is how I feel
Still take propranalol and fluoxetine. Try to pracice mindfulness and breathing and relaxation exercises but when it gets this bad I cant. Take baths twice daily. Take vitamin and magnesium supplements. Ruth

Hi Ruth. Thank you for answering. Have you had any medical diagnoses at all for any of these symptoms? I ask that NOT because I'm thinking something is terribly wrong, just so that I'm not dismissing anything. Sorry to bombard you with more questions! What sort of docs did you consult? Did the fluoxetine and propranolol ever help? Did anything ever help? I think the mindfulness is a great idea, and hopefully that helps you stop scanning your body. I know it's hard when you're super anxious though, and I am sorry to hear just how much this is impacting on you.

I'm not going to tell you there's nothing wrong with you, again not because I think there is, but because it's not my place as a stranger on the internet who isn't a doctor. I also understand that you are convinced there is. I can say from personal experience that anxiety can cause nausea, vomiting, upper gastric pain, and diarrhoea. I imagine it can also cause some of the other symptoms you mention, from high levels of tension most or all of the time. It's also exhausting.

Deep down, what do you really believe? Do you think it's anxiety but have some niggling doubts, or do you truly believe you have a serious illness? Perhaps that will help you to know whether you want to pursue the medical or the psychological route for help, or maybe both. If CBT didn't help before, maybe a different therapist would be better, or different meds. Try not to give up hope, however hard it seems.

busterrufus

30-06-19, 17:40

Hi Ruth. Thank you for answering. Have you had any medical diagnoses at all for any of these symptoms? I ask that NOT because I'm thinking something is terribly wrong, just so that I'm not dismissing anything. Sorry to bombard you with more questions! What sort of docs did you consult? Did the fluoxetine and propranolol ever help? Did anything ever help? I think the mindfulness is a great idea, and hopefully that helps you stop scanning your body. I know it's hard when you're super anxious though, and I am sorry to hear just how much this is impacting on you.

I'm not going to tell you there's nothing wrong with you, again not because I think there is, but because it's not my place as a stranger on the internet who isn't a doctor. I also understand that you are convinced there is. I can say from personal experience that anxiety can cause nausea, vomiting, upper gastric pain, and diarrhoea. I imagine it can also cause some of the other symptoms you mention, from high levels of tension most or all of the time. It's also exhausting.

Deep down, what do you really believe? Do you think it's anxiety but have some niggling doubts, or do you truly believe you have a serious illness? Perhaps that will help you to know whether you want to pursue the medical or the psychological route for help, or maybe both. If CBT didn't help before, maybe a different therapist would be better, or different meds. Try not to give up hope, however hard it seems.

Thank you for your considered reply Dying Swan. First dr said "functional abdominal pain" All others have said they cant find anything else Pain is nearly always on the right side.. The usual suspects have been investigated ,gallbladder, ulcers, bowel, eosopahagus, kidneys,everything I think is checked in the scans I mentioned , but then again Im not completely sure what some of them do cover. I suppose to be told that they don,t show anything does not really tell me what has actually been ruled out. I have tried googling the tests to see what they can rule out but they can be a bit vague and there is still the worry that something may not have been noticed .

I have had 4 consultations with gastroenterologists. One was with an individual gastro doc and the others were when I was referred to the gastro team at hospital, where I also saw a consultant before and/or after the recommended scans. I believe my most worrying symptoms are caused by a physical problem. I have been told in the past not to keep asking drs for reassurance too, but I see it as asking for help and a solution.

I did have psychological help for several years as it sparked severe anxiety. I know I am an anxious person by nature and have been since my teens . The worry caused by my physical symptoms and doubts made my anxiety unbearable. Hence the mental health treatment for the last 9 yrs. I actually had to beg the gp to refer me for psychological help as the anxiety and depression were so bad. Propranalol has helped calm down the fast heart beat the adrenal triggers. Fluoxetine, well I'm not sure if it actually helps or not , but I take it anyway as it was prescribed for the accompanying depression . I was also on a small dose of diazepam but for a few years now the gp's have not allowed me any. Something to do with new regulations and danger of addiction.

I appreciate you sharing your symptoms with me. Do you have them a lot? I think the fact that my pain is so persistent is a big factor in my anxiety. Also there are so many diagnoses which are missed, plus people are always saying "you know when something is not right". That's why I asked my original question I suppose.

I find your final sentence interesting as I am pretty sure I have given up hope of a good outcome. Basically I think I have a physical problem which has not been detected over the past nine years and has probably got to the stage where it cannot be cured.

I am so glad you replied as you obviously have had some symptoms which are similar to mine. I take it that you to calm some of them. May I ask what worked for you? I do understand, though, that everyone's experiences with anxiety symptoms will probably be different. I hope you are much improved. Best wishes Ruth

ps its a strange thing but computer problems always seem to cause a spike in my physical pain and anxiety. I am not very computer literate and just get by with the basics but if something goes wrong it can make things worse. I suppose that I is increased muscle tension adding to everything

busterrufus

30-06-19, 17:51

Blue Iris
I didn't realise that it was an argument. I just assumed you had not read a part in my post in this thread which mentioned some of my history of experience of anxiety. Best wishes.

Dying_Swan

30-06-19, 18:53

Hi Ruth. I tend to only get those symptoms when my anxiety is severe, and I usually have an episode of a few weeks a year. I understand you're saying yours is severe, and yes, it's awful, and I feel for you, especially if you're living your life feeling that way. It's always worse in the morning for me, not sure if you're the same. I think that's to do with cortisol levels. Getting up and keeping busy helps, but can feel impossible. CBT has helped me a lot, but then I have had loads of CBT, and I mean loads. I've also just had to accept its part of who I am, and I'll always be prone to anxiety. I guess some of us just are, sadly. I also take meds, but like you I'm unsure if antidepressants ever helped me. I just swallow them as I'm told. As a side note, my current antidepressant (venlafaxine) gives me upper gastric pain and I take max dose omeprazole for that. I've not heard of fluoxetine doing that but always worth thinking about and speaking to your GP if you think it's a possibility. Yes, they are very cautious about benzodiazepines like diazepam. My GP allows me a small amount which I'm careful with. Years ago I had a stronger one which was amazing for panic, but I suppose the problem there is you block it rather than learning to overcome it, then you just need more for the same effect and addiction/dependence looms.

I think you're right about trying not to seek reassurance, as that can fuel a cycle of needing that reassurance, but it's very sad that you feel you don't have any hope. I understand that, believe me. I've just had a quick read about functional abdominal pain syndrome, which does sound horrid. Is that what they think you have? I'm just wondering if there might be a specialist in that field specifically, who might be able to help you? Perhaps something to look into and speak to your GP about. Chronic pain, regardless of cause, is debilitating, and I do not think there would be any harm in mulling all this over with a GP again. It's not that I think you have some awful incurable illness, more that 9 years is a long time to suffer. Be honest with them and tell them how desperate you are feeling. You've probably already tried it, but if not, you might find progressive muscular relaxation exercises can help with the muscle pains and overall relaxation?

busterrufus

30-06-19, 19:28

[QUOTE=Dying_Swan;1882263]Hi Ruth. I tend to only get those symptoms when my anxiety is severe, and I usually have an episode of a few weeks a year. I understand you're saying yours is severe, and yes, it's awful, and I feel for you, especially if you're living your life feeling that way. It's always worse in the morning for me, not sure if you're the same. I think that's to do with cortisol levels. Getting up and keeping busy helps, but can feel impossible. CBT has helped me a lot, but then I have had loads of CBT, and I mean loads. I've also just had to accept its part of who I am, and I'll always be prone to anxiety. I guess some of us just are, sadly. I also take meds, but like you I'm unsure if antidepressants ever helped me. I just swallow them as I'm told. As a side note, my current antidepressant (venlafaxine) gives me upper gastric pain and I take max dose omeprazole for that. I've not heard of fluoxetine doing that but always worth thinking about and speaking to your GP if you think it's a possibility. Yes, they are very cautious about benzodiazepines like diazepam. My GP allows me a small amount which I'm careful with. Years ago I had a stronger one which was amazing for panic, but I suppose the problem there is you block it rather than learning to overcome it, then you just need more for the same effect and addiction/dependence looms.

I think you're right about trying not to seek reassurance, as that can fuel a cycle of needing that reassurance, but it's very sad that you feel you don't have any hope. I understand that, believe me. I've just had a quick read about functional abdominal pain syndrome, which does sound horrid. Is that what they think you have? I'm just wondering if there might be a specialist in that field specifically, who might be able to help you? Perhaps something to look into and speak to your GP about. Chronic pain, regardless of cause, is debilitating, and I do not think there would be any harm in mulling all this over with a GP again. It's not that I think you have some awful incurable illness, more that 9 years is a long time to suffer.Be honest with them and tell them how desperate you are feeling. You've probably already tried it, but if not, you might find progressive muscular relaxation exercises can help with the muscle pains and overall relaxation?[/QUOTE

THanks for the reply DS
Yes my anxiety is nearly always worst in the morning. I agree cortisol is probably to blame for that. I try to keep busy too but its impossible when the pain is so bad. Fluoxetine can cause me stomach pain if I don't drink enough water with it, but that is not in the same place as I get my abdominal pain.

I do not think my abdominal pain is functional. I am convinced it is not and the dr is wrong about that. Not the same symptoms. Ive talked to my gps many times about itand they always just seem to refer me back to the gastro dept. I'll probably ask to try somewhere else, although I do think its a gastro problem . I'll have a think how to approach that.

Thank you for listening and for the advice. Ruth

pulisa

30-06-19, 20:42

I attend a chronic pain clinic and know what it's like to live with constant pain and anxiety. I do know that the more stressed I am the more pain I have because my neural pathways are compromised and don't behave as they should do in someone without long term pain.

They teach you ACT (acceptance and commitment therapy) at these pain clinics and say that meditation is more effective than morphine in controlling pain. I don't get any relief from pain killers but I know if I can tone my anxiety down the pain is less dominant. It's so hard though.

I would say that you have had more than enough tests. You don't want any potential "incidental" findings from continued tests/scans which are completely harmless but will
cause you even more stress and pain. Essentially normal means within the normal range for benign results. It's a standard "saying" in test reports.

pulisa

30-06-19, 20:51

Have you ever had anyone mention myofascial/trigger point pain to you, Ruth, and how it all ties in to muscular tension and irritable nerve endings? It certainly can cause severe abdo pain and mimic many conditions with the degree of pain.

busterrufus

30-06-19, 21:51

Have you ever had anyone mention myofascial/trigger point pain to you, Ruth, and how it all ties in to muscular t.ension and irritable nerve endings? It certainly can cause severe abdo pain and mimic many conditions with the degree of pain.

Thank you for both your replies Pulisa. I am sorry you have had to learn about ACT from your own experience with pain. I will look into it further. Anxiety definitely makes my pain worse too which of course is a vicious circle as the pain makes the anxiety worse.

I have heard about trigger points but don't really know anything about how and where they cause pain. I remember the physio finding one in my thigh when he was treating me for low back and groin pain. I remember he pressed on it for a while. I did not know they can cause abdominal pain. I imagine there will be something on the internet about them, I think it should be ok to search for that?
Thanks very much for the information. Best wishes, Ruth

pulisa

01-07-19, 21:31

There's loads on the internet about pelvic pain syndrome and trigger points/myofascial pain syndrome. It's seen a lot at pain clinics and does seem to affect those with long term anxiety disorders. It just might be worth your while doing some research on how the pain can presentand how it doesn't respond to conventional treatment.

busterrufus

03-07-19, 21:46

Thanks for the advice Pulisa. I have started looking at these. Best wishes, Ruth

pulisa

05-07-19, 19:38

Do you think you could believe that it is possible to be healthy yet live with a chronic pain condition, Ruth? This is something which helps me and I have constant pain. Of course it's easier to accept some days than others and there are constant mental "obstacles"but chronic pain isn't illness-it's a condition to be managed.

busterrufus

06-07-19, 00:35

Do you mean to live with chronic pain which is not caused by a disease state? A functional condition then?
I'm not quite sure what you mean Pulisa.
Or a painful condition which has not been diagnosed?
I know I'm probably being a bit thick. Sorry if I've misunderstood your meaning.
I understand there must be people living with daily pain who have have been misdiagnosed . I believe that the pain symptoms I started with 9 yrs ago are caused by an illness. I do know that they also cause me very severe anxiety but that this is secondary and I do believe the original illness has not been diagnosed yet.
I know this view will probably not be popular on the forum.
Hope I've managed to explain properly.

pulisa

06-07-19, 08:25

I mean that having a chronic pain condition doesn't mean that you have an illness. You're in pain but not ill. That belief can make a big difference in how you live and approach your life. Chronic pain is very different from acute pain. Loads of people live with daily pain who have not been misdiagnosed. Anxiety just makes it all worse of course.

Has anyone suggested a referral to a Chronic Pain Clinic? Sadly many people who have been dogged by anxiety all their lives end up with chronic pain conditions. You would have to be open to new ideas regarding how you approach your pain though.

Fishmanpa

06-07-19, 10:26

I believe that the pain symptoms I started with 9 yrs ago are caused by an illness. I do know that they also cause me very severe anxiety but that this is secondary and I do believe the original illness has not been diagnosed yet.

And that's where the faulty thinking is. That's the real illness. My ex suffered from Fibromyalgia caused by depression. She, like you, had real symptoms, swelling etc. and many tests and nothing could be found of a physical nature. I have chronic pain but there's a medical cause. That said, when I am in pain, if I focus on it, it gets worse. Pain, whether physical or psychological can be influenced by your state of mind.

Positive thoughts

Dying_Swan

06-07-19, 11:52

Hi Ruth. How are you doing?

Have you been to a pain clinic at all? I think that's a really good idea of Pulisa's. It's not to say the pain isn't real as it obviously is, but I've heard pain clinics can be really helpful in managing it. I've not been but wanted to years ago for a chronic condition I have. I never understood why the pain was always worse at certain times of the day, and my GP said it can be a recognised phenomenon in chronic pain, and the pain is very real. This may not be the same for you at all, but perhaps a pain clinic referral would feel like a positive step forward for you? And potentially something you could pursue at the same time as trying to find the root cause of the symptoms you are suffering, if you still feel that is what you want to do.

I hope you are doing ok today

busterrufus

09-07-19, 22:39

Thanks Pulisa and dyingswan for the info about pain clinics.I will look into it further.
Also to fishmanpa for your opinion.
Best wishes