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Please help me prepare so my new GP doesn't dismiss my fatigue like my old GP did

9 replies

raggedymum · 27/09/2013 14:32

Okay, next week I've got my first appointment with my new GP. DH says I tend to minimize my symptoms when I talk to doctors, and I really want to not do that, and get my new GP to take my fatigue problems seriously. So I'm looking for help about what I should say that will make sure I transmit the reality of my problems.

Sorry if this turns out to be long -- what I thought I'd do here is explain my history and then a few features that have convinced me over the past few years that what I'm experiencing is not normal, and hope that you all can help me pick what elements are best to emphasise to the new GP.

So, it all started when I went to the GP in the summer of 2009 complaining that I was really tired over my summer holiday I had planned to redo the garden, and even though we bought plants and I was enjoying myself, I found myself crying in the garden because I was so tired all I wanted to do was sleep. The GP took blood and said to come back if I was still tired in 3 months. Three months later I come back, still tired, and she takes more blood. Repeat 6 months later, and again after another 6 months. At this point the GP tells me my blood results are fine, and 'some people are just more tired than others'. So I try to go on, figuring life is normal, even though it doesn't seem right and I seem much less capable than before. Then I get pregnant that summer, which of course explains why I'm tired. Although I noticed that during the first trimester, when everybody said there is lots of fatigue, that it wasn't unusual fatigue it was more like a string of my more-tired days (ie, so tired I have to lie my head down on my desk in the office for 15-20 minutes to keep going the rest of the day). And then I had a new baby, so of course I was tired. But DD is now 1.5yo, and I am still tired and I am sure it is not solely because I am caring for her.

So, the reasons I have come to conclude that this is a fatigue problem, and not just normal are:

I've learned that I have to watch my energy expenditure very carefully. If I do an activity (like going to the store, or to the park with DD) on both days of the weekend, or on one day for two weekends in a row, I will find that I 'crash' by usually Wednesday afternoon. I'll be so exhausted that I actually feel sick to my stomach, and I usually have to come home from work and sleep.

What's really frustrating is that I can't tell at the time -- I'll be having fun doing stuff, want to do stuff, and feel like I have the energy to do stuff, but I have to remember to stop or I'll be ill later.

My life is drastically different from 4 years ago. I do less than I could before. I used to be able to do things on the weekends, and it wouldn't matter if I did something Sat or Sun or both, or if I had done something the previous weekend. And I used to do this along with cleaning the house, which now I can barely manage. If I both clean and do an activity, that can sometimes lead to the crash as well. For example, we moved (I was going to say recently, but it's been almost a year now -- it has taken this long to register with the new GP and we're still barely unpacked) and even though I'm having great fun organising my clothes in closets, even doing that can exhaust me and I'll crash later in the week.

There are several things I used to do that I don't anymore. I used to wear contact lenses, but stopped having the energy to do that extra 15 minutes in the morning and 5 in the evening to put them in/take them out (I suck at putting them in, which is why it can be 15 minutes...). I haven't worn them for years, even though I wanted to. By now I've given up.

I used to make little online photo albums for my Mum, every 2-3 weeks, and that slowly petered out since 2009 -- first I would try to 'get caught up' on my summer or winter holiday, and maybe do half the ones I planned, and then I stopped entirely after 2010. It used to be a fun thing I did in the evening during the week, or on a weekend if we weren't doing anything else. Now I can't even imagine trying to do something like that in the evening; I need to rest.

I used to have little household 'projects' on the go, like a recipe book that I was putting together, or little signs for DH to know what leftovers are in the fridge, or a scrapbook. I haven't touched any of that in years. Basically, I used to spend my idle time doing little things, and over the last few years I haven't. And this definitely pre-dates DD by several years.

And it just seems like other people can do more than I can. I see advice on MN about all sorts of things, like how to meet friends, and I just know I can't do the things suggested. There is someone in the neighbourhood I'd like to get to know, and I'd love to pop by and have our DDs play, but I keep finding I'm too tired. The one weekend she came and invited us over, I had already done a bunch of cleaning and the ~1hr at her house exhausted me and I crashed that week and had to come home from work on Wed.

Okay, I've probably gone on for long enough. So what should I tell the GP? I feel like I should emphasize that my life is different from before, and that this can be traced to 2009, well before DD. And I sense anecdotes/details are good to say. Like I'm thinking my rules about weekend activity, and how it impacts my ability to work, and maybe mention the contact lenses and photo albums?

Also, I'm wondering if I should specifically make a separate appointment for this, as this is a first appointment with a new GP, which they said we had to do in order to get our repeat prescriptions. DH and I have adjacent appointments, which they said we could go in together, so we have 20 minutes in total, but DH needs to talk too. I'm not sure I can go into all of this in 10 minutes with also saying hi and getting our prescriptions, and I also have a weird ear rash that I really need something for. But if I do make another appointment for the fatigue, what do I say at this one? Do I mention that I've been experiencing fatigue and any details at all, or do I just leave it all for later?

Thank you if you've managed to read this far! Please help me prepare. I don't want to mess this up.

OP posts:
oohdaddypig · 27/09/2013 14:40

Hi there.

I think there is a huge tendency for GPs to dismiss tiredness, especially in new mums. I really feel for you as chronic fatigue is so disabling.

Who is your appointment with? You could even ask the receptionist who they recommend? And perhaps book a double appointment so you are not rushed.

I would give the very specific examples you have provided here. State that you cannot even exercise. I would lay it on thick as you deserve more support and have the energy to enjoy your child. Flowers

Specifically, I would request a check on vit D levels, full thyroid function (not just TSH), iron levels and coeliac. If they refuse, ask why.

Have you any other symptoms? Eg allergies? Or stomach problems? Also, what is your diet like?

Good luck OP

elspethmcgillicuddy · 27/09/2013 14:42

Definitely make a separate appt to discuss this as it won't get the attention it needs in a registration appt. I think it is very important to work out what you want from the GP before you go in and don't be afraid to tell them what you want. It will help them know how best to help you.

It sounds like you may have a problem with fatigue but it also sounds like you are getting to know how to continue with your life with this problem. Support to continue this may be all the GP can offer. What would you like from them? Support? A diagnosis? More tests? Referral to specialist? Referral for counselling? Advice on work?- maybe adapted hours would work for you.

I think if you do this you will have the best chance of getting a good supportive relationship with your GP. And if you don't like them don't be afraid to make an appt with one of their colleagues and try them!

LunaticFringe · 27/09/2013 14:45

This reply has been deleted

Message withdrawn at poster's request.

raggedymum · 27/09/2013 17:15

Thank you so much for reading! Okay, so I should probably book another appointment. Should I say anything about the fatigue at this one, or just wait?

I'm afraid I don't know what tests they did Blush I'm terrible at doctors -- I just want to hear that I'm fine and get out of there as fast as I can. Which if there is a real problem doesn't work so well. I guess I need to get more proactive and ask questions. Thanks for the specific pointers, ohdaddypig.

We've picked a doctor that is meant to be quite good with patient relations, and particularly kind for mental health issues which DH and I have both had I don't know if that would be good or bad for fatigue, though. I'm just hoping that it means he is very understanding.

What do I want? Hmm. Well, I guess if it's something fixable, I'd like it fixed! Although maybe that would have come up with whatever blood tests the old GP did. Beyond that, I guess I want to know if/what there is actually wrong with me. DH keeps complaining that I don't "want" to do things, but I usually do want to -- I just know if I do, that I'll pay for it later. I sometimes feel pressured into doing more than I should, and then regret it. It might be easier to explain to myself and to others why my life is constrained if there is an actual health issue. And there is stuff at work, that can take into consideration chronic conditions for particular performance reviews, etc. And it would make it more justifiable to do things like decline a weekend work activity (like I had to recently) because I couldn't imagine making it through these really busy work weeks if I had done that.

I do have IBS, and also an autonomic disorder. We recently tried a gluten-free diet for DH, which if anything made me worse -- I felt faint and dizzy a lot (although it seemed to help DH a little, so we're trying to stick to it for him, and I have gluten items on my own).

OP posts:
RockinD · 27/09/2013 17:56

Summarising what others have said, you need to check vitamin B12 and folate, vitamin D, plus you need a full thyroid panel (TSH. FT4, FT3, TPO and TgAB) and a full iron panel including serum iron and ferritin.

Being realistic, if we are talking NHS, although you sound American from the way you write, get as many of these tests as you can. If the NHS is unwilling, you can get these all done privately.

All those results need to be OPTIMAL - not just within the reference range.

Be very careful not to be fobbed off with a CFS or ME diagnosis. They did that to me at one point when I was actually hypothyroid and very deficient in ferritin and vitamin D.

There will be something underlying this and it is your doctor's job to find it.

CFSKate · 28/09/2013 08:10

It does sound like it could possibly be ME/CFS. I've posted this before, it has a list of other things that can cause fatigue that should be checked out.

Differential Diagnosis:
When indicated on an individual basis, rule out other diseases that could plausibly simulate the widespread, complex, symptom pathophysiology defining ME. E.g.: Infectious disorders : TB, AIDS, Lyme, chronic hepatitis, endocrine gland infections;
Neurological:MS, myasthenia gravis, B12;
Autoimmune disorders : polymyositis & polymyalgia rheumatica, rheumatoid arthritis; Endocrine:Addison’s, hypo & hyper thyroidism, Cushing’s Syndrome; cancers; anemias: iron deficiency,B12/megaloblastic;
diabetes mellitus; poisons

You said I do have IBS, and also an autonomic disorder in the PDF both IBS and autonomic problems are listed as symptoms that are part of ME.

raggedymum · 29/09/2013 17:46

Thanks, kate! I'll have to read that through carefully. It looks packed full of info.

OP posts:
Lonecatwithkitten · 29/09/2013 19:26

To rockin's list I would add ANA and rheumatoid factor otherwise you miss a whole group of autoimmune diseases such as Sjögren's and mixed connective tissue disease.

raggedymum · 02/10/2013 12:19

Thanks everyone! I had the first appointment and only mentioned that I'd be making another one to talk about fatigue. He ordered some standard blood tests so that we can go over them at the next appointment. I'm quite excited about that, because I've never had a doctor actually plan to talk to me about my test outcomes! I'll make a list of the tests above and see if I can suggest them if all the standard ones come out normal, and also read through kate's material. Would it be too totally weird to show up with a printed copy?

OP posts:
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