• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Who diagnosed you?

ryan31337

Senior Member
Messages
664
Location
South East, England
Sorry that you're suffering Julie, its rotten. I don't know where you are in the UK but if you're able to visit London (central or suburbs) I can PM the details of a couple of excellent doctors (cardiologist & endocrinologist) that work together and have a lot of patience and understanding for people with tricky health problems like us. You seem quite lucky in the sense that your GP hasn't given up on you, but perhaps someone with a different background might help. Let me know if interested.
 
Messages
1,478
My GP didn't diagnose me. He did all the tests and then referred me to the CFS clinic where a GP with special interest in ME there diagnosed me using the CDC criteria. They asked questions on psychiatric history as part of the diagnosis and I was assessed for anxiety and depression (I was found normal/outside the action range for these).

I was under the CFS clinic for a year and then referred back to the GP. The diagnosis was useful for me since it allowed me to continue working by establishing reasonable adaptations which the clinic helped with by writing letters to my employer etc. It was also pivotal for me battling UNUM to challenge their rejection of my insurance claim for loss of earnings. Once diagnosed you can also be classed as disabled since CFS is classed as a disability under the equalities act.

The clinic did give me GET but not CBT since they said "I had a good attitude towards recovery". I'm not sure what that means. The biggest benefit from them though was help with pacing.

I think my clinic was a benefit overall and they were upfront about it being a physical illness with no cure. However, I think the quality of service varies from clinic to clinic widely across the country. It took 4 months after my GP referral to get the meeting with the GP wSI and then a further 3 months before my meeting with the occupational health therapist at the clinic, so they appear overstretched.
 

Jemima37

Senior Member
Messages
407
Location
UK
Sorry that you're suffering Julie, its rotten. I don't know where you are in the UK but if you're able to visit London (central or suburbs) I can PM the details of a couple of excellent doctors (cardiologist & endocrinologist) that work together and have a lot of patience and understanding for people with tricky health problems like us. You seem quite lucky in the sense that your GP hasn't given up on you, but perhaps someone with a different background might help. Let me know if interested.
Thank you. I am in North Wales, UK. Sadly quite a way from London. I am not too far from Chester.
 

Jemima37

Senior Member
Messages
407
Location
UK
My GP didn't diagnose me. He did all the tests and then referred me to the CFS clinic where a GP with special interest in ME there diagnosed me using the CDC criteria. They asked questions on psychiatric history as part of the diagnosis and I was assessed for anxiety and depression (I was found normal/outside the action range for these).

I was under the CFS clinic for a year and then referred back to the GP. The diagnosis was useful for me since it allowed me to continue working by establishing reasonable adaptations which the clinic helped with by writing letters to my employer etc. It was also pivotal for me battling UNUM to challenge their rejection of my insurance claim for loss of earnings. Once diagnosed you can also be classed as disabled since CFS is classed as a disability under the equalities act.

The clinic did give me GET but not CBT since they said "I had a good attitude towards recovery". I'm not sure what that means. The biggest benefit from them though was help with pacing.

I think my clinic was a benefit overall and they were upfront about it being a physical illness with no cure. However, I think the quality of service varies from clinic to clinic widely across the country. It took 4 months after my GP referral to get the meeting with the GP wSI and then a further 3 months before my meeting with the occupational health therapist at the clinic, so they appear overstretched.
Thank you for your reply.

Isn't it wrong they quiz about mental illness first, I know depression can cause fatigue but chronic fatigue surely is far more overwhelming than any anxiety or depression fatigue. I have suffered fatigue in the past due to anxiety and it's been nothing like I experience chronically now.

There is a CFS clinic local to me in Chester so I will push for a diagnosis there I think.

Thank you for your help.

Julie
 

ladycatlover

Senior Member
Messages
203
Location
Liverpool, UK
Oh I see. So they didn't have cfs?

Hmm, interesting question! I'm not a doctor, merely a patient, so can't answer that. It's perfectly possible to have ME and also have other stuff wrong with you. The worry is that some folks are misdiagnosed with ME when they actually have something else that's treatable. And then nothing else is looked for.
 

Sean

Senior Member
Messages
7,378
I was very lucky to be formally diagnosed by a professor who was the director of a world class immunology research and treatment centre. This was in the late 1980s.

To be diagnosed by somebody with such standing has helped a lot in dealing with benefits claims, etc. Would have been a lot harder to survive without that level of authority behind the diagnosis.

The cards fell my way on that occasion. :thumbsup:
 
Messages
1,478
Thank you for your reply.

Isn't it wrong they quiz about mental illness first, I know depression can cause fatigue but chronic fatigue surely is far more overwhelming than any anxiety or depression fatigue. I have suffered fatigue in the past due to anxiety and it's been nothing like I experience chronically now.

There is a CFS clinic local to me in Chester so I will push for a diagnosis there I think.

Thank you for your help.

Julie
Yes it is wrong, although I guess part of this is to do with an absence of recognised diagnostic tests. I am hopeful that some more specific biochemical markers could be used for diagnosis in the near future. This may not give a cure, but at least hopefully make diagnosis quicker and more definitive for insurance companies and the like. That all depends upon whether NICE will accept them of course.

Good luck with your diagnosis journey I hope your clinic is helpful.
 

Jemima37

Senior Member
Messages
407
Location
UK
Yes it is wrong, although I guess part of this is to do with an absence of recognised diagnostic tests. I am hopeful that some more specific biochemical markers could be used for diagnosis in the near future. This may not give a cure, but at least hopefully make diagnosis quicker and more definitive for insurance companies and the like. That all depends upon whether NICE will accept them of course.

Good luck with your diagnosis journey I hope your clinic is helpful.
Thank you
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi Jemima37, I can only recommend that you take @ryan31337 advice, get to the private Drs he suggests in London and get seen. Anxiety and agoraphobia can be reactive issues to the illnesses you have and not necessarily mental health issues in and of themselves. I had what seemed like agoraphobia for a few years - turned out it was the illness causing it.

If you try and carry on with the NHS you will, as far as I can tell, waste years of your life and get false hope and no help. Private Drs, specifically recommended by knowledgeable patients has helped me the most.

Your thyroid could well be undertreated and a really good endocrinologist such as Ryan suggests may be able to get to the bottom of the issue for you. Just going by blood tests is not enough and you may need more or different meds for it. Check out STOP thyroid madness.com for tons of thyroid info.

POTS can also run alongside other issues like CFS or thyroid issues etc and the cardio ryan suggested can rule in or out autonomic dysfunction.

I also live in Wales, and the health service is sadly lacking in any good specialists, even in Cardiff, nd I have to pay and travel to get help. If you can manage it, take some valium or similar and find some good help now. It will save you so much trouble later down the line.

Good luck!
Justy x
 

Jemima37

Senior Member
Messages
407
Location
UK
Hi Jemima37, I can only recommend that you take @ryan31337 advice, get to the private Drs he suggests in London and get seen. Anxiety and agoraphobia can be reactive issues to the illnesses you have and not necessarily mental health issues in and of themselves. I had what seemed like agoraphobia for a few years - turned out it was the illness causing it.

If you try and carry on with the NHS you will, as far as I can tell, waste years of your life and get false hope and no help. Private Drs, specifically recommended by knowledgeable patients has helped me the most.

Your thyroid could well be undertreated and a really good endocrinologist such as Ryan suggests may be able to get to the bottom of the issue for you. Just going by blood tests is not enough and you may need more or different meds for it. Check out STOP thyroid madness.com for tons of thyroid info.

POTS can also run alongside other issues like CFS or thyroid issues etc and the cardio ryan suggested can rule in or out autonomic dysfunction.

I also live in Wales, and the health service is sadly lacking in any good specialists, even in Cardiff, nd I have to pay and travel to get help. If you can manage it, take some valium or similar and find some good help now. It will save you so much trouble later down the line.

Good luck!
Justy x
Thank you Justy

I couldn't travel that far sadly, I wish I could but it is well out of my limits right now.

I was attacked in 2012 by my brother and was later diagnosed with anxiety, agoraphobia due to PtSD. Things improved after a year of therapy, I still got anxious at appointments or social events but I went out and lived despite it. Then when they seevere fatigue hit mid 2015 I was at yet another doctors appointment, kept waiting 45 minutes and I felt so ill with fatigue I had a serious panic attack in the nurses room. I've since then not been to an appointment and my gp even comes to my house.

I noticed my anxiety worsen during the last year in the form of agoraphobia and serious social anxiety due to isolation I guess. It's been the staying at home due to ill health, no interaction with anyone but my husband and children as I've no other family. My fears of going out returned but all to do with my fatigue and I feared being out feeling so ill and passing out. I can even find the school run hard in the car on a morning if I feel poorly and I dread the drive incase I'm too ill to get home. I've had many a panic attack driving, all due to how unwell I've felt this last 18 months. So yes it's returned but nothing like how it was before. My anxiety and agoraphobia before was due to panic and fear of going outside incase I was hurt or panicked. Now it's purely due to how ill I feel. Yes the appointments thing is because of what happened at one but again all linked to ill health. I struggle to even sign for a parcel if the postman knocks but that's only due to how ill I feel. I can't jump up and run to the door and on occasions I have I've felt faint and ill. This illness has caused my agoraphobia and social anxiety issues definitely.

Thank you for your reply.

Julie
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Thank you Justy

I couldn't travel that far sadly, I wish I could but it is well out of my limits right now.

I was attacked in 2012 by my brother and was later diagnosed with anxiety, agoraphobia due to PtSD. Things improved after a year of therapy, I still got anxious at appointments or social events but I went out and lived despite it. Then when they seevere fatigue hit mid 2015 I was at yet another doctors appointment, kept waiting 45 minutes and I felt so ill with fatigue I had a serious panic attack in the nurses room. I've since then not been to an appointment and my gp even comes to my house.

I noticed my anxiety worsen during the last year in the form of agoraphobia and serious social anxiety due to isolation I guess. It's been the staying at home due to ill health, no interaction with anyone but my husband and children as I've no other family. My fears of going out returned but all to do with my fatigue and I feared being out feeling so ill and passing out. I can even find the school run hard in the car on a morning if I feel poorly and I dread the drive incase I'm too ill to get home. I've had many a panic attack driving, all due to how unwell I've felt this last 18 months. So yes it's returned but nothing like how it was before. My anxiety and agoraphobia before was due to panic and fear of going outside incase I was hurt or panicked. Now it's purely due to how ill I feel. Yes the appointments thing is because of what happened at one but again all linked to ill health. I struggle to even sign for a parcel if the postman knocks but that's only due to how ill I feel. I can't jump up and run to the door and on occasions I have I've felt faint and ill. This illness has caused my agoraphobia and social anxiety issues definitely.

Thank you for your reply.

Julie

I'm sorry to hear what a tough time you have had of it. I found that the more I understood my illness the less the agoraphobia etc affected me. I would panic when driving, or out shopping tc because I felt all the time like I was going to collapse, but was pushing through it because I thought I was mentally ill. Once I began to really rest and give in to realising I had a real physical illness the anxiety and agoraphobia lessened.

I still don't go out alone, but that is because I can only go out for a few hours a week and need t use a wheelchair to stop me from becoming worse.

I don't know what to suggest right now to help you, but realise that the anxiety etc can pass. Can you at least be asked to be seen by an endocrinologist for the thyroid issues? this kind of prescribing shouldn't really be left to GP's. I managed to get to hospital appts with my husband taking me and taking valium when my agoraphobia was at its worse and I couldn't go outside the front door alone, or travel in the car more than a mile or so from home. It was like torture, but I got through it.

You can also request all your test results from your surgery, with reference ranges from the labs. Then you can investigate yourself. Anxiety etc is quite normal in people with undertreated hypothyroidism. Thyroid UK website is also great and they can help you access cheap (ish) tests from home for thyroid autoantibodies etc. It might also be worth doing the adrenal saliva test to see how your adrenals are coping, and checking nutrient levels- low ferritin levels will cause thyroid issues to be worse for example.

http://www.thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism.html

https://stopthethyroidmadness.com/

It is important that you make sure the thyroid issues are adequately treated etc before assuming ME/CFS. You can have both, but it might be all to do with the thyroid and could be treatable.