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AIBU or should I bring up CFS to my GP?

(62 Posts)
strawberrieshortcake Tue 10-Dec-19 21:07:15

I have suffered with chronic fatigue for more than two years, I have periods where I can barely move around my house without becoming completely exhausted. My fatigue gets worse with exercise, carrying a 15kg suitcase requires hours of rest afterwards.
I have had around 6 blood tests over these periods and have always had low neutrophils which my GP believe is natural for me and have had low iron and vitamin D which has been corrected with tablets.

I am still chronically exhausted even after this and my GP’s next course of action is to refer me to a cardiologist because I mentioned occasional heart palpitations. I understand the GP wants to rule out a genuine heart problem but at my age and family history I think my heart isn’t the issue. Also she admitted herself that heart issues rarely cause chronic fatigue.

I think that from researching my symptoms CFS is a possible diagnosis- I understand I am not a doctor but she has not even mentioned it as a possible reason and I feel like she keeps fobbing me off with blood tests. She’s sent me for three in less than three months.

Should I mention CFS to her? Do you think she would consider it? Should I ask for a different GP? Btw I cannot afford private healthcare in any capacity so this is not an option.

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Booboostwo Tue 10-Dec-19 21:14:19

There is no harm in discussing it with your GP but there is no test for CFS and it is usually diagnosed by excluding all other possible causes. She also wouldn’t be doing her job if she ignored your heart palpitations, they need investigating whether they are related to your other symptoms or not. However, maybe your GP needs a bit more pushing to consider other possibilities for your fatigue.

strawberrieshortcake Tue 10-Dec-19 21:17:14

@booboostwo thanks for the perspective. I know IABU about the cardiologist but she’s already given me an ECG which was fine and I know that the other test they’ll give me will be fine so I do feel it is a bit of a waste of time. I’m worried that if I bring up CFS that she’ll think I’m attention seeking or wanting the diagnosis if you understand what I mean?

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Anotheronetwo Tue 10-Dec-19 21:26:00

CFS is a diagnosis of exclusion; the diagnosis you are likely to get if no specific causes of your fatigue are identified. Because the mechanisms of CFS are unclear, there aren't really effective treatment options. If your GP can identify another condition you might have more treatment options, so I'd let them keep going.

scoobydoo1971 Tue 10-Dec-19 21:30:59

I have CFS. It started in my 20's and was dismissed by all sorts of medical professionals as unexplained tiredness or stress. I had an underactive thyroid and polycystic ovaries picked up back then, but it never got better with treatment. Years later at 45 I was diagnosed with Ehlers Danlos syndrome type 3 which often presents with fatigue as a main symptom. CFS is a very real medical condition in its own right, but it can be linked to other conditions that are off the radar of a GP. I am managed by three consultant care teams as I have a very complex health care background. Ehlers is the tip of the iceberg. You need to do some research into your local hospitals to see which consultants have an interest in chronic fatigue syndrome and ask to see them. In my case, I saw a rheumatologist for suspected lupus and he diagnosed Ehlers-Danlos within 1 minute of seeing me walk into the room as my gait is a giveaway. To get the right diagnosis requires seeing the right sort of specialist, and you may need to guide your GP in this respect. I get terrible dizzy spells and have occasional black outs from orthostatic hypotension from Ehlers Danlos. You should look the condition up online as it is under-diagnosed and may fit with your symptoms.

strawberrieshortcake Tue 10-Dec-19 21:38:22

@Anotheronetwo I understand that but it’s at the point that she is not looking for a reason for my fatigue and is only focusing on the heart palpitations.

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strawberrieshortcake Tue 10-Dec-19 21:43:15

@scoobydoo1971 thank you for sharing your experience. I checked up on the ehlers danlos symptoms and I honestly have none of them except fatigue. I don’t have any hyper mobility, stretchy skin or joint pain but I’ll bear it in mind.

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notangelinajolie Tue 10-Dec-19 21:48:01

Have they tested your B12? I get palpitations and extreme fatigue amongst other symptoms when my levels are getting low.

strawberrieshortcake Tue 10-Dec-19 21:59:40

@notangelinajolie I have had my b12 checked every time and it was in normal range.

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sparklesandmoresparkles Tue 10-Dec-19 22:00:39

There are so many conditions that have fatigue as one of the main ones, I wouldn’t suggest CFS until you have had more testing. My GP(s) (4 or 5 if I remember correctly) tried to push me down that route 3 years ago, because they couldn’t be bothered to do more than the basic tests with me (even my works occupational health said they couldn’t advise me on anything other than CFS because the NHS hadn’t done enough tests). I had low B12, ferritin and borderline TSH, but because the results were all ‘in range’ they were dismissed, as they couldn’t possibly be either the cause, or an indication that something was going on. hmm

When I started with my own research, I discovered that I have low stomach acid, although that is only because of the baking soda test that I did following reading a lot on Dr Myhill’s website. The NHS were not interested in testing further, so I have had to self treat (although medicating on my doctors recommendation, and at £60 per month cost). It got me back to my normal self within 6 weeks though, after 7 months off.

I’m certainly not saying that CFS isn’t real or that you don’t have it, but make sure they fully investigate the cause, before you get put into a diagnosis box that they can’t test for, and in my personal experience was handed out far too readily.

I’m now feeling ill again, 3 years later. It’s different this time as my symptoms are not the same, although fatigue is one of the main ones. I still have low stomach acid, but I’m still treating that, so I don’t believe it to be that that is causing it. However I’m determined not to be fobbed off yet again with the basic tests. I’m being tested for heart issues, and I’ve asked them to look at endocrinology as well, as I started HRT 6 months ago and my current symptoms are text book for a particular disease.

Sorry that was a bit of an essay - it’s something I’m passionate about after my last experience! Good luck and I hope you find out what it is.

strawberrieshortcake Tue 10-Dec-19 22:09:11

@sparklesamdmoresparkles I fee like I should have elaborate on the blood tests I’ve had but I have been tested for so many illnesses with fatigue as the major symptom and all have comeback back negative: Type 1 Diabetes, Hypothyroidism, polycystic ovaries, coealics disease and more. I am genuinely wondering what else it could be as I’m not sure what else they could test for at this point. I understand you did some self investigations but I honestly cannot afford any type of non- NHS treatment so I’m stuck with what the GP can lead me to.

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gobbynorthernbird Tue 10-Dec-19 22:15:06

Heart issues can cause fatigue.

Butterfly02 Tue 10-Dec-19 22:16:43

I have chronic fatigue due to previous sepsis but no diagnosis of cfs. I would ask for more tests to rule out things stating chronic fatigue is an issue.
Maybe try doing some diaries to show how tired you are after different activities, rather than pursuing a diagnosis of cfs. Is it worth being referred to occupational therapist and physiotherapist to see if they can help with reducing fatigue when carrying out jobs?
I would look at getting different experts opinion to rule in or out other diagnosis - you don't want to be wrongly labeled at this stage when there maybe a reason for the fatigue.

strawberrieshortcake Tue 10-Dec-19 22:28:01

@gobbynorthernbird my GP says that the type of heart palpitations I described isn’t correlated with long term chronic fatigue so she doesn’t believe they are connected

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strawberrieshortcake Tue 10-Dec-19 22:30:28

@Butterfly02 what type of tests should I ask for. I have researched and can’t think of many illnesses with fatigue as the symptom which I haven’t been tested for. And the ones I do find, none of the other symptoms apply to me at all.

How would I go about being referred to a therapist, I wasn’t aware I could be referred to one without any type of diagnosis? What would they even treat me for?

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gobbynorthernbird Tue 10-Dec-19 22:32:16

@strawberrieshortcake and my GP told me I suffered from depression and anxiety. Luckily, my cardio consultant didn't agree and I now have a diagnosis and the correct medication.

Sheldonoscopy Tue 10-Dec-19 22:37:50

Can I ask what your neutrophil levels are? My ds was born with neutropenia, so it’s an area of interest for me.
Even now I know when his levels are low just looking at him (he gets ‘neutropenic eyes’) he’s very lethargic and hyper sensitive to pain too, despite him being mainly normal levels now.

I hope you get some answers. I’m diagnosed fibromyalgia and the lethargy rings a bell for me there

sparklesandmoresparkles Tue 10-Dec-19 22:43:16

@strawberrieshortcake I understand, it’s tough and I’m very lucky to be able to afford it. Although I’m somewhat disillusioned with the NHS’s ability to help those with more complex requirements unless they specialise in that particular avenue. This is not a GP bashing at all - I understand that it is such a tough job, especially at the moment and that they are General Practitioners so it’s not their job to know everything about everything.

But I am fed up with hearing about people being told their results are normal because they are in range, when those ranges are so broad and non specific. My B12 was 216 in a range of 211 to 900+. Yet this was normal and dismissed by most GP’s. There was no normal reason for my level to be so low - not vegan for example. It should be over 500 as a healthy level. The problem with these ranges is that I do not believe they are fit for purpose in the current format. One example being that the range could be for all day, for something that changes throughout the day, so a result in the morning that should be high, is very low for that time of day, but could be normal in the evening. Or the fact that supplementation of B12 in the previous 4 months will affect your result. Plus the fact that the ranges are usually based on average results being received by the labs, rather than clinical guides. Given that most people being tested are doing so because something is wrong with them, then this will of course change what the ranges are. There should be more information given to GP’s on interpreting test results, rather than blanket ranges that show almost everyone has normal results.

I would push your GP to give you the actual numbers of all your test results, and their reference ranges and units, and have a google as to what that means. There are plenty of people on here that can help you understand them, and on the HealthUnlocked forum as well. This will give you the information to take to your GP to discuss further, and possibly explore further testing options.

strawberrieshortcake Tue 10-Dec-19 22:51:57

@Sheldonoscopy lowest it’s been was 0.7 and highest 1.2. Ok sorry to hear about your son, I wondered if the low neutrophils was causing the fatigue but my GP didn’t seem too concerned.

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strawberrieshortcake Tue 10-Dec-19 22:54:13

@gobbynorthernbird I understand however I genuinely don’t believe there is anything wrong with my heart. Of course I could be wrong but I am way younger than most people who start having heart issues, have no family history, only have heart palpitations and have had a completely normal ECG. I’m just frustrated as my GP believes that heart palpitations is a separate issue to the fatigue and is completely ignoring the fatigue which is my biggest problem.

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Butterfly02 Tue 10-Dec-19 22:56:49

I was referred to a community OT who specialises in fatigue by an OT from equipment and adaptation services (which I self referred to). The community OT referred me to a physio (on waiting list). With therapists you need symptoms not usually necessary to have a diagnosis.
Alot depends on your NHS trust (postcode lottery). I've read in the past that some GPS will refer to psychology (to rule out mental health issues), my other symptoms were all gynaecological and gastric so they were the first consultants to refer to, I was then also referred to cholerectal. Some trusts have chronic fatigue clinics to piece together everything and coordinate tests. You might want to Google your NHS trust see what they provide or ask your gp what services are available. I don't know if I'll ever instigate a diagnosis of cfs as all I need is the ability to access the correct services. This is very difficult and even when they know you need something to help they can't always provide it due to the lack of funds. If you find they advise you need something but they can't supply you with it don't give up. I was told I needed an electric bed and wheelchair for outside use ( my trust only provides wheelchair if you need it inside as well) I went on to apply for grants with the letters from NHS staff to assist me.
OT also advised me re forgetting my pride and helping me make life easier - applying for a blue badge, Pip application (which help me buy a mobility scooter so I can still do the school run on my good days).

strawberrieshortcake Tue 10-Dec-19 22:58:34

@sparklesandmoresparkles my GP actually showed me my results on the computer screen. The only few that were low were iron, vitamin D and neutrophils . These have been historically low for me but the fatigue I’m feeling is newer. Also I’m supplementing for literally every vitamin and mineral using multivitamins. I can ask for the print out for my blood test but I am already supplementing for everything I was deficient in.

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strawberrieshortcake Tue 10-Dec-19 23:00:46

@Butterfly02 thank you for the help, I’ll see if my trust has any services that may help me. I don’t think my doctor will do anything about the fatigue until after I go to the cardiologist though and I have no idea what the waiting time for that is.

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gobbynorthernbird Tue 10-Dec-19 23:20:18

I understand what you're saying, OP. I have POTS which means my actual heart is fine, and I had numerous normal ECGs.

However, a cardio consult was the reason I now have meds, know how to manage my illness, and have an actual life now. Which I didn't for 5 years.

I'm obviously not saying that's what you have, just that they could be linked and your GP would not necessarily have any idea.

QueenOfCatan Tue 10-Dec-19 23:40:00

Have you had any food intolerance tests? I had chronic fatigue, chronic pain and severe brain fog for years, it took a long long time to get doctors to take me seriously and I was told that my job was making me tired (I was a childcarer, I worked 3 days a week and had an 8hr day and finished at 4pm so hardly strenuous! I had to have a nap when I got home each day) but towards the end of that I was desperate and I discovered through elimination diets that I had an issue with wheat or gluten, giving it up helped massively and it moatly cleared up issues that I never even thought it would too. Its worth asking to be referred to a dietician and try eliminating things for periods to see if it helps. I had to cut dairy from my diet when breastfeeding my eldest and that took the edge that remained off too.

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