Advice on broaching the subject of CSF/ME with GP

Brain and nerves
1

Hi, just joined the group looking for a bit of advice on how to broach the subject with my GP, I used to be a nurse and don't want to come across as saying 'well I've been reading this etc'

A little back ground. About 5 years ago I had a work related injury where I was attacked by a patient and tore my rotator cuff, which lead to me changing jobs, in the new job I was bullied and as a result started suffering anxiety and depression. It was more or less under control, mood was still low at times and occasional motivational problems but I was managing to take 7-8 hours a week of dance classes, and applied to do a new course at uni.

Then in July of last year my mum died quite suddenly. I had no help from family with the funeral etc and as a result ended up with a small viral infection, sore throat, and flu like symptoms. Since then I am now finding I'm tired even with out real exertion. I've had to cut my 7-8 hours of dance a week to 3-4, spread during the week as following them I'm completely floored for a couple of days, the only way I can describe it is the kind of tiredness that comes after doing a week of nights, and trying to stay awake after them, my eyes can't stay open, walking around the shops, or just making a cup of tea I can feel my eyes closing. Even doing housework, I have to do it in stages because I start aching and feeling exhausted.

Night time sleep is not the best, insomnia some times, finding it difficult to fall and stay asleep, and still being absolutely shattered after getting up that I feel like going back to bed after breakfast.

this has got progressively to this stage over the last 12 months, and is markedly different to how I was before the stress of my mums passing away and the viral infection.

ive started getting increasingly annoying restless legs and arms at night, aching, needing to move them, and then pins and needle/scratching type sensation around the joints (then the next morning feeling like I've run a marathon with the.

general aches in shoulders (not just where I had the injury) frequent headaches (tension?) sinus pains, joint pain in toes, sore and feeling like I want to crack them. paracetamol not really working

gastro upsets acid reflux. Times where I just can't concentrate, and occasionally forgeting something I've just written down. A lot of the time my head feels like I've got the flu.

im already being treated for anxiety and depression still and know that it could be just a exhasibation of this, but the other symptoms seem to point in other ways.

Just worried they will either just think I've been reading to much (very common between health professionals) or they will just pass it off as depression without considering other options.

ive got an appointment in a few weeks for a medicine review, so was thinking of bringing it up then. Do you think it could be CSF and any ideas on how to bring it up without sounding as if I've just read this...

thanks for for reading that long winded description

Simon

2

Hi Simon, just noticed your message. Sorry, but I'm just going to bed. Could be CFS or fibromyalgia. Can't be diagnosed until all other things have been ruled out. A rheumatologist experienced in ME/CFS/fibrosis is best person to diagnose. Regards.

3

Your symptoms sound spot-on for ME/CFS. Every single one of them. I don't think there's such a thing as "reading too much." Reading is a very important way to get informed about this illness. The more informed you are, the better you can present your situation to your GP. Go to a well-respected website, like the CDC website (CDC stands for Centers for Disease Control and Prevention in the U.S.) Type in ME/CFS and print out a list of symptoms to show your GP (assuming the symptoms resonate with you). Another good website is the "solve me/cfs initiative" website. Advocate for yourself. Don't accept that tired old phrase we often hear:"it's all in your head." I can't imagine depression or anxiety causing all of your symptoms, though a poorly informed doctor may tell you that. Get a referral to an infectious disease doctor, or (second choice) a rheumatologist with a knowledge of ME/CFS. If you see the appropriate specialist, you'll save yourself tons of time and distress.

4

You sound as though you're feeling intimidated by your doctor. I suggest that it's your body and your health so you should be confident and forceful. It's ok to read up about things; that's your choice and the attitude that people shouldn't take their health into their own hands by learning about it is wrong.

My doctor, who is quite young, thinks it's good that people take an independant interest in their own health by researching online etc, even though some of the things we read may be incorrect, doctors aren't always right either. I've found out things about my health online that my doctors didn't know or were incorrect about, and that my currant doctor agrees with.

Doctors aren't really in a good postition to diagnose ME or Fibro because not much is known about them yet, due to not enough research and no medication as yet, so tell him/her that you want a referral to an ME specialist, or Rheumatologist. Demand it politely because it's your right!

Don't let them fob you off because that'll waste time. I was fobbed off for years, told I was depressed when I wasn't and offered Prozac, which I didn't take. If only I'd known to be more forceful!

5

As you seem to be gradually developing more symptoms, I can't see why your doctor would pass it off as depression. The same thing happened to me, after getting a back injury at work I suffered very little in terms of symptoms. However, as time went on my symptoms have gradually got worse, with new symptoms occurring. My previous doctor was happy to keep telling me I had IBS and anxiety, and my diagnosis would have stayed that way if I hadn't got a second opinion. I have to admit my new doctor has been very good, in terms of making sure that other possible causes for my symptoms were ruled out, and I think thats the key here, finding a doctor that is willing to listen and act. My new doctor is always quite willing to listen to my views and thoughts, and advise and act on them, however, if I mentioned things to my previous doctor she would look at me as if to say 'I'm the doctor here!', and dismiss many of my views and opinions, and made me feel like most of my problems were in my head, when I knew they weren't.

In your position, I would be tempted to over exaggerate your physical symptoms to your doctor, not that you personally feel like you need to though considering what you are going through, but it may prompt your doctor to start the further investigations you need to diagnose CFS. As an example, you mentioned you have gastro problems, maybe elaborate on this to your doctor and make it sound worse than it is. Many gastro problems don't have to be directly linked to depression / anxiety, I'm sure there a plenty of people suffering with depression / anxiety that don't have gastro / digestive problems, so in theory your doctor should have no choice but to follow this up with further investigation. Write a list of all your symptoms, or even better keep a daily diary of how you're feeling, or what symptoms you are going through for a week or two, and show it to your doctor. But focus more on your physical problems and not mental one's, maybe only mention your worse bouts of anxiety and depression. I do suffer from anxiety, but I made a point of not mentioning it too much to my doctor, and I think that helped me getting the tests I needed to make my diagnosis of CFS as it seemed to him that I was managing to control my anxiety most of the time. Its not ideal to have to exaggerate symptoms but sometimes its the only way to get results. If all else fails, get a second opinion. Either way you need to get the ball rolling, it took me 2 years of investigation to get my diagnosis.

I hope you get the help and treatment you need, and all the best for the future.

6

The symptom list is a great idea Paul but I suggest that he uses the term ME rather than CFS because fatigue is only one symptom, ME is a disease,not a syndrome and you don't go to see a CFS specialist, you see an ME specialist.

7

Hi Simon,

              I   have been through a difficult time. January I didn't feel well and got a nasty sinus virus. I do tend to build things up in my mind and worry. The congestion in my ears continued so I decided to  go to the docs with this problem. He found I had fluid in the inner ear which I am taking anti biotics. I was a lot happier to know what I had. I also have to remind myself I am now 79 so how fit should I expect to be. Five weeks ago I lost my retriever the last morning still sticks in my mind. I am haunted by her looking at me pleading for help which of course I couldn't offer. So do we expect to be on top of the world at a time like this. So I would suggest you tell the doc how you feel but do not offer your opinion on what you think it is. Thats his job. good luck

8

Good point Georgia, my use of terminology wasn't the best there!!

9

 I know lots of people still do use CFS but it doesn't really help us to be taken seriously. They're even thinking up a new name for it!

10

So from what you are saying ME is just another name for CFS, is that correct? And for my own personal reference it would be better for me to refer my CFS diagnosis as ME?

11

Hi Georgia

ME and CFS we regarded as the same thing. Just about all drs

Call it chronic fatigue syndrome for several years now. I think you

Are confusing it with just chronic fatigue such which is indeed

Just an individual symptom. And some people just have that .

Wherever you look it up in articles and guidelines of it is CFS/ME .

Personally I always say I have ME as I was diagnosed with that

20yrs ago . But my gp calls it CFS as do most drs.

12

You were not incorrect pal. It is called CFS by drs . Has been

For several years now. CFS/ME to be exact. Although long suffers

Do still tend to call it ME . As I do myself

13

It is the same thing Paul. CFS/ME

14

Hi Simon so sorry you are feeling so unwell. No fun is it. And even worse

Not knowing why you feel so bad with all these symptoms. Does

Sound like ME, but as someone else has said, other conditions need

To be ruled out first . I had to take ill health retirement from nursing 19yrs ago

.was diagnosed with ME 20 yrs ago. It is really hard sometimes

Dealing with your own health when a,nurse. Well what I should

Say is difficult dealing with other health care professionals!

Especially drs. Most of them don't like being told what to do .

List your symptoms. Time it all and how it has changed or not over

The time. It will them be up to your dr to do a full blood work up.

If he does try to fob you off and suggest you have depression

Don't be afraid to say if you don't think it is that. You certainly do

Need blood tests Anyway. You know that yourself being a nurse.

I was fobbed of by GP s and in the end requested I be referred the hospital.

I saw an endocrinologist who had a special interest in ME. He had

Many patients and ran his own clinic at the hospital. I also saw

A professor who specialised in ME. I took part in his research.

These days yes there are. ME specialists you can be referred to. But you

Do need to get some basic blood tests done by your GP first. Most

People with CFS/ME have had an MRI scan at some point to rule

Out MS. A lot of the symptoms are so similar

Good luck and I hope you get some answers soon. Just getting a

Diagnosis makes a huge difference. The not knowing really gets you down.

Take care

15

Thank you for the info Janet. Its all so confusing  not good for the brain fog! I think I'll stick to calling it CFS/ME, as I have done since being diagnosed.

16

Indeed Paul.it is confusing . I think most people tend to call it by

The name given when they had the diagnosis . Even fibromyalgia

Can cause even more confusion. Some think CFS/me and fibro

Are all the same thing .take care .

17

I was told by a lady that used to run the local ME group that ME in the umbrella term for a range of symptoms. I'll send you a link to a video that explains it better. As far as I know CFS only describes the fatigue but doesn't cover any of the other numerous symptoms.

18

I'm not confusing anything Janet. The Solve ME/CFS initiative has a video in youtube and in it it explains why CFS is  not a good name for this illness, which is what I've thought for a long time. Part of what is said is that you wouldn't call lung disease coughing syndrome, which is a great point.

CFS makes it sounds as though we're just tired and I've heard many ME patients saying that they don't like the name CFS. Just because doctors use it doesn't mean it's useful or right. It is changing and I believe that the term will go out of use, hopefully sooner rather than later..

19

Thanks everyone for all the replies. Would have replied sooner, but felt sick all day. Hopefully my GP will, consider the idea that it may be something other than just the anxiety/depression. Got an appointment in a couple of weeks, to see my GP, if I wanted it sooner I'd have to see one of her partners, and they are not very accomadating to listening to paitients, plus shes always been my GP and will be easier to speak to her, than any oth the others. 

Simon

20

Hope she is helpful Simon.try to take it easy and don't push yourself

Too hard. Take care