Desperately in need of support and advice (ME/CFS)

[Faraway11]

Hi everyone, I hope you are all well. I'm in desperate need of some support and guidance. I have suspected ME/CFS and have not yet had a diagnosis and I'd really appreciate some advice on how to navigate this situation. For years now I would have episodes where I would fall ill for seemingly no reason, like flu symptoms without the flu. It would happen every so often, flushed face, feeling hot, sore neck glands, extreme fatigue. I never thought much of it, until it got worse around 9-12 months ago. I have since been struck with bouts of extreme fatigue. The kind of fatigue where I am too exhausted to even talk sometimes, along with the flu symptoms, brain fog, pain, unrefreshing sleep, insomnia, post exertion fatigue. I got signed off work back in Feb and went to the GP to explain my concerns. The GP did agree my symptoms were consistent with ME/CFS but obviously wanted to rule out other things first. I have since had numerous bloods, immune tests, I've been under cardio before to check my heart. Everything (apart from a bout of high cortisol) came back relatively normal. I went back to my GP, explained that everything had come back fine so could I please have a referral for investigation regarding a diagnosis. They sent a referral off for me, only for the referral to come back as rejected because they sent it to a place that provides support and not diagnosis. I am at my wits end, this is ruining my life. Everywhere I go, I have to plan ahead to make sure there is somewhere for me to rest should I need it. I have to make sure I rest for days upon days just to prepare myself for ONE day out somewhere. I am still not working because of how exhausted I am. I'm getting married in June and 1. I need to work for money to support my wedding and my partner, and 2. I fear I'll be exhausted the whole time. I have an appointment with my GP tomorrow, she requested me to come in, and I'm so scared that she is going to tell me there is nothing more they can do or nowhere to refer me to and I'll be stuck in limbo. If I do have ME/CFS, I need a diagnosis to help me get support as I am certainly not able to go back to work full time. I'm at a loss. Everyday is stress and worry. I feel like a burden on my partner who is financially supporting us during this time. I'm sat here crying as I write this. I just don't know what to do anymore, I've been having some really bad thoughts. I just need some advice on how to approach my appointment tomorrow and maybe some words of encouragement please :(

Sorry to hear that you are going through this. Fatigue is horrible and the last thing when you need when you are feeling like this is to have to fight to get answers.

ME/CFS is a diagnosis of elimination, or should be. Fatigue can be a symptom of numerous conditions, many of which are totally treatable. You say you have had blood tests, but there may well be other tests that are needed. Other than the fatigue, have you had any other symptoms at all? If this has been going on for a while you might need to think back to if anything has changed over time and you now consider it normal even though it is perhaps not.

For managing the fatigue, spoon theory or pacing is helpful. The idea is each person has a certain amount of energy which they can use each day. Different activities will drain that energy at different levels and it is therefore finding the balance. When you have fatigue, your battery is low to start with, so you have less energy to spend and therefore need to manage that carefully so as to avoid a cycle of crashing energy. Once you get to a point where you are able to consistently manage certain tasks, you can also then look to slowly increase them over time. There are fatigue clinics which may be able to help you with this, if your GP is able to refer you.

With work, would it be possible for you to work from home, and also to explore the possibility of working part time as a kind of extended phased return? This will obviously depend on what your job is, and also how flexible your employer is, but if you think you might be able to manage a few days a week working from home it might be something to consider.

I have suffered from Fatigue for a number of years. I was diagnosed with Endometriosis, but the fatigue didn't improve significantly after the operation that I had. A few years later, I was then diagnosed with IBD. This is now being treated and I have found my fatigue is significantly better than it was. I am still unable to work full time, but my quality of life is so much better now that the likely root cause of my fatigue is being appropriately treated.

Hi @Faraway11 , long time ME sufferer here. I am sorry to hear what you are going through. I can understand that you want a diagnosis, so you should definitely press your GP tomorrow for a new referral. Can you perhaps research online today and find out where in your area deals with ME diagnosis, and tell the GP that’s where you want to be referred to?
One thing I will say though, is that having a diagnosis doesn’t solve the problem. Presumably, once you have a diagnosis you will be referred back to the ME Clinic, and they seem very hit and miss in whether they are helpful. I found my local one hopeless and the negative effect of the amount of energy required to attend was far more than any benefit I received.
I am sure you know already, that if this is indeed ME, there is no magic bullet out there to make you better. As pp has said, it’s all about pacing. So, finding your base level and learning to live within it. It is very frustrating and can be extremely limiting. I changed my working hours to part time, but eventually had to give up work altogether.
Have you joined any Facebook groups about ME? I have found them very helpful for information and tips on coping, plus also for helping me to feel less alone with this horrible condition.

Hi! Thank you, I’ve heard about pacing and I was actually considering getting that visible device that keeps getting advertised to me, to help with the pacing. I was kind of reluctant to get one until I had a formal diagnosis but I’m really struggling. I’ve informed my manager that when I return I’d like to be placed on reduced hours whilst I settle back in to see how I feel. I have actually got a job interview this week for an ideal part time job round the corner from my house that doesn’t involve expending a lot of energy so I’m really hoping things fall in my favour

There is no treatment. I’m sorry to be bleak but I found the quicker I came to my senses on this the better. They can treat the illnesses around it so if they find out you have POTS they can give you medication for that. Some people find supplements help, some don’t. There’s something called LDN that you can get from Dickson’s chemist if you have ME. As others have said, the most valuable thing is to learn how to pace. There are no ME clinics near me and no one consultant speciality deals with it. If you do have it, there are some charities that help like ME Action that you can speak to. But in all honesty, if you do have it, the best advice I can give you is start listening to your body, don’t try and fight it.

Hi @Justpolly, thank you for your kind input, I’ll definitely push with my GP tomorrow. I’ve had a look to see if there are clinics in my area but they mainly seem for those that already have a diagnosis. I know that if I do get diagnosed, it won’t be easy and it’ll be lifelong, but I’m hoping it will help me in regards with support from employers and I’m hoping to go part time and apply for PIP on the side. When we moved into our house we had disability handrails in our bathroom. I herniated a disc the same month we moved in so we kept them up as I was struggling to walk. That was 2 years ago and they are still there because I’m finding them helpful for getting in and out of the bath.. I find it odd that I’m capable of a part time job but still find bathroom rails helpful. It makes me feel I’m over reacting :(

Hi @Faraway11so sorry you’re in this position. I have severe and chronic fatigue as a symptom of another condition (as do many people, unfortunately).
Please, please take care of yourself as you learn about this condition; pacing is essential as it stops us from doing too much & then experiencing a flare. However, until you learn your everyday limits - or perhaps more accurately the range in which we can operate - it’s not possible to do that; the “normal” range may be different every day.
Personally I had no benefit from ME / CFS clinics apart from regular bloods to check up on key general indicators such as ferritin, B12, vit D, etc.
By all means have a go at Graded Exercise Therapy but be aware that it’s largely been discredited now & one just ends up more exhausted rather than fitter!
Allowing myself some level of acceptance of my situation has helped but I’m not going to hide from you this doing so has been hard, mentally.
Keep posting your questions.

Thank you x I’ve already started trying to listen to my body a little better and not push myself too far. I’m not sure if this is consistent with ME/CFS but sometimes my heart rate goes quite high? Like I can just be on the pc or reading and my heart will feel really fast. I was brushing my teeth the other week and it was 140 something. It’s like the smallest bit of activity raised it so much

Hi

Sorry you are going through this. It really is awful to feel this way and I really sympathise.

I think as pp said, the diagnostic doesn’t really help as there isn’t much treatment though it is a relief to know what’s going on for sure. I’ve found amitriptyline can bring temporary relief and again, as pp said, pacing. My GP told me to only walk for 5 mins at a time for months basically. Through doing that I was able to then build up to longer periods of walking and activity so I’d really recommend trying to lean into what your body is telling you to do and rest, rest, rest and then build up in tiny (can’t stress that enough) increments.

I was just wondering why your GP can’t give you a diagnosis?

I’ve recently been given this diagnosis of cfs by my GP through a process of elimination. It took a full 9 months ish - autoimmune blood tests, checked for neurological signs, POTS test (she took my heart rate and BP lying down the standing up etc), had stool sample tests, ovarian cancer test/bowel cancer test (I have stomach issues as well). I made sure to request tests for everything I thought it could possibly be.

once we had eliminated all that she was happy to give me a diagnosis and refer me to the support clinic.

I also think I have symptoms of MCAS because I too experience flushing (and dermatographia and hives). I may pursue this after getting my the cfs support as I think the testing is slightly more complex. For now I take an antihistamine every day and vitamins D high strength every day.

Hi OP
i have had episodes of what you’ve described - especially the flu like symptoms - and it mostly my thyroid causing it. Discovered I have Graves Disease and eventually it want overactive. Please check your thyroid results, also iron, b12, folate etc.

Hi! I’ve been checked for everything mentioned :) everything came back okay x

Hello @Faraway11 . Just posted on another MEcfs related thread so I'll plop this comment in for now and try and post later ..,ohhhh look at me...I'm pacing 😁🙈

Pacing and acceptance. My two big things that helped.

hiya! My advice would be to double check the results and check where they are within ranges - NHS ranges can be very wide and you can ‘look’ in range but it’s actually what’s causing symptoms - this was me. (Same for iron, ferritin etc) - just double check your results.

@TheJoyousExpert I would agree but also say I have iron count on the lower end and still have MEcfs.

@MewithMEIron count on the lower end is not great - you need to try increase this.
Have you looked at the symptoms of low iron?

This can affect your heart rate - you mentioned your heart sometimes beats faster. And thyroid problems can definitely affect your heart rate. I absolutely had the symptoms you’ve described & was given an ME/CFS diagnosis. and also check those thyroid results - thyroid hormones affect almost EVERYTHING
what i am trying to say is, try not to just accept the ME diagnosis just yet and TRY not to just accept when results come back ‘okay/in range’. really explore what could be causing your symptoms

@TheJoyousExpert I take iron all the time. I suspect I don't absorb it that well but I had many many conversions with my doctors about iron levels before diagnosis. My thyroid is fine. I agree, absolutely worth trying to address anything as an alternative diagnosis.... Sometimes it is both though.

Agree with others re checking your blood results, ok and in range are not necessarily the same as optimal.

I was where you are a couple of years ago @Faraway11. I'd not long had covid (again) so GP referred my to the long covid clinic. From what I gather the advice from them is much the same as from the MECFS clinic - rest, pacing, acceptance. It was useful to meet (virtually) other people who were in the same boat.

I've posted before about the Visible app/device. It helped me understand where my energy was being used and why I felt so shit just doing ordinary things (heart rate in the 180s having a shower was an early stand out moment ). I mentioned this to the long covid OT and was referred to cardiology. Came out with a diagnosis of inappropriate sinus tachycardia and POTS. Hig h resting heart rate had been put down to anxiety by the GP at the time, I'm really glad I didn't accept that.

I had been doing great for a good 18 months or so, back at work and also able to do stuff outside of work. All went tits up again at the start of this year though 🙄 I've been off since January with a relapse. Have a meeting next week to discuss slow phased return 🤞 Occupational health have been really supportive, I'd recommend having a chat with them if you have that option.