AIBU to be pissed off! Need advice from mums with chronic illness

[memyselfandmuffin]

I really need some advice from anyone with ME/CFS - or any chronic illness tbh. Pretty please

Brace yourselves for a long read! Sorry!

I was diagnosed a year ago with ME, following a year of feeling shattered and poorly and struggling to be taken seriously by any doctors. It was a diagnosis by exclusion – basically all my results looked within the normal ranges, my symptoms fit the bill (extreme, delayed onset fatigue, flu-type symptoms, IBS-type symptoms, brain fog, swollen glands, muscle pain etc.) As far as the GP is concerned, it must be ME because they can’t find signs of anything else.

I’m now 5 months pregnant and I’m feeling utterly shite. I came off my medication (low dose amitriptyline for bowel trouble and insomnia) and supplements when I found out I was pg, was severely sick up until 18 weeks, been bedridden again for much of the time and now at 24 weeks it looks like I’ve got SPD.

I went to see my GP today and was basically told, suck it up buttercup! They won’t do any more blood tests on me because I’ve had full bloods /liver/ thyroid/ iron etc done before I was diagnosed with ME and they all came back in the normal range.

And as far as my midwife is concerned, I’m a young, fit, healthy woman, low-risk, no reason for me to see an OB to ask about my options for labour and breastfeeding, just research hypnobirthing and active birthing and I’ll manage just fine.

I’m screaming with frustration…I just want to be taken seriously!! My glands are enormous, my temperature is 101, I’m aching and fluey and sleep deprived and hormonal, and my GP says I’ve got nothing to worry about.

My main worry is how I’ll cope with the baby when it comes. DH couldn’t be kinder, he does more than his share of the housework and works full time (I’m off work long-term sick). But a trip to Tesco can wipe me out for days. WTH is going to happen after I have the baby?!!

I just want to be able to see someone who actually knows about ME/CFS, and can advise me if it’s actually that that I’ve got? What if it’s something different that might be harming the baby?! And I need some advice and reassurance on how I’m likely to cope with labour, if it’s safe for me to breastfeed, is there anything I can do that will help me feel better!!

Is there anyone out there that’s been in this situation?! AIBU to be royally pissed off about being fobbed off like this?! Any advice on how to get to see someone who can help? Or am I being a NHS-grabbing hypochondriac

And if you have any tips for coping with pain and tiredness with a little one, I’ll be eternally grateful! I’m not so concerned for myself as for the baby…I feel like such a crap mum and the baby hasn’t even been born yet…I just want to be able to look after it like it deserves.

for reading anyway x and sorry if I sound a little ranty x

I have endometriosis, adenomyosis, ME and Fibromyalgia and 18 month old twins. I am not convinced that the latter aren’t actually a thyroid issue but because certain tests are in normal range they won’t investigate further. The rheumatologist refused to see me because I’ve already been diagnosed with fibro by a GP. Once you have these labels it’s verg difficult to have a doctor take you seriously about anything else sadly.

Things like thyroid function change over time and especially during pregnancy so saying they tested you over a year ago isn’t good enough. I’ve been paying for private thyroid tests (they send a kit, I do a finger prick and they have the results online in 48 hours). Certain levels aren’t right but until the main one is out of range the GP won’t do anything. They’re about £70 a go, and I’ve done 3 so far. They also include antibodies which GPs don’t usually test for. You can also have things like B12, folate etc done.

I’m sorry your dealing with this too

oh you lovely people! Thank you all so much for your replies.

I guess I need to go back to the GP with my big girl pants on and stop feeling guilty about taking up NHS time!

@DrunkonCalpol, @PseudoQuim - That was what I was wondering! In an ideal world I'd much prefer a vaginal birth, but I don't want to be naive...I'll do my research on ELCS, at least with a C-section I'll know what to expect and be able to store up my energy for it.

@Didntcomeheretofuckspiders - Thanks, I'll have a look at children's centres and ask for a referral to the HVs. I've got NCT classes booked but frankly was a bit confused about what other classes I should attend. I've been looking into hypnobirthing because meditation and yoga has helped me ME-wise in the past.

@thirtyplusone - well I guess it wasn't an official diagnosis! A GP told me that by elimination she thought I had either ME/CFS or post-viral fatigue syndrome, and to come back in 6 months if I hadn't got better and she'd give me an official diagnosis, but they couldn't do anything to treat me anyway. I gave up at that point and decided I'd just see what I could do myself to manage it with diet/supplements. But I'm not particularly scientifically minded, so I ended up trying all sorts and seeing what worked for me. I didn't know a specialist referral was even an option!! As I said - I will go back to my GP and make a bit of a fuss until I can get a referral.

And no ana blood tests done - again, a trip back to the GP is on the cards

@gussyfinknottle, @Schroedingerscatagain - and thanks so much for your replies xx I'm not a routine lady at all... I tend to wing it tbh! GF is on its way from Amazon though...my sil swears by it.

@PragmaticWench, @NotUmbongoUnchained - Thanks, I'll look into the cost of a cleaner. Money is tight atm since I've been off work so long but I agree a clean house makes me feel much better mentally.

@Calledyoulastnightfromglasgow - I've actually just started a nutritional course with the Optimum Health Clinic. I was on B12 supplements before I was pg and I take a pregnancy multivitamin now. My diet isn't great tbh, I love cooking when I have the energy, but when I don't my fallback tends to involve lots of carbs and not enough protein/iron/fruit and veg. I'm hoping a nutritionist will give me the kick I need to improve my diet.

Also, I’ve made the mistake of just not bothering to see the GP ever unless I have something totally unrelated like a sinus infection or something. They don’t know how bad things are because I never ever see them. So when I go in and cry and tell them that I’m not coping and I can’t walk etc I don’t think they take it very seriously. Maybe I’d be better off going in there every few weeks talking about how much I’m struggling, then they’d be more inclined to do something to shut me up ;) As it is, the last few times I’ve been there they’ve said “What is it you want me to do?” - gee, I don’t know, I’m not a bloody doctor, maybe you have some ideas!

I’ve been on morphine for 13 years now, I just get my meds on repeat and keep my head down. No point in much else really.

@memyselfandmuffin some of the bloods the Gp will probably not know about OR a proper interpretation of them. You can have autoimmune diseases with negative bloods and it's a secondary care specialist, you need a rheumatologist, that will have a good working knowledge of what to look for and how it presents.

Don't start any fad diets yet, do a daily diary of everything; from waking up and through the day until bed. Ask your family of any autoimmune diseases that are known of back to your grandparents or further if known.

@swingofthings - Thanks for that, that's interesting. I'll look into Lyme and B12 - as far as I know the bloods showed my B12 reserves were normal, but I'll have to do some more research! Seems like I'll have to ask specifically for these tests because my hcps are really not forthcoming.

Re the cognitive stuff, I've done a psychology course with the Optimum Health Clinic which despite my scepticism, actually helped. It helped me to let go of what I couldn't control, stop beating myself up and worrying so much about what everyone else thought and just listen to my body. Sounds pretty basic but I'd been such a driven high flier (not boasting, true! ) that I'd actually forgotten how to actually listen to what my body was telling me.

@Darknessinthevalley - Thankyou so much x just what I needed to hear! Not that your dad is ill, but that it hasn't been the defining part of him.

@Scullerymaid - Thanks, I'll post them when I get my new results back.

@icclemunchy -thanks! I didn't know you could bf on amytriptyline, that was a lifesaver for me before I was pg.

@mehfruittea, @SluttyButty - sounds stupid but I didn't know a referral to a rheumatologist was even an option?! I'm pretty sure I don't have EDS though?

@ApplePippins - Thanks for replying, so glad you're better x As I said, I'll be working with a nutritionist soon to work out some dietary stuff which I hope will help!

@dottycat123 - Thanks, I've seen her website! If the NHS can't do anything for me that's definitely something I'll look at x

@laurzj82 - I'm in South Devon. As far as I can see there's not much down here, there is a specialist clinic in Plymouth which isn't particularly nearby but may be worth a shot? I'll definitely mention it to the doctor!

@sluttybutty rheumatology because they deal with diagnosis for EDS, which is what my post was about.

When I saw rheumatology I had already been diagnosed with hyper mobility but my GP wanted a clearer diagnosis with recommendations for pain management; as I was bugging the hell out of them for stronger pain relief than simple paracetamol. GP made me feel like a drug seeker.

So rheumatology diagnosed me with the more specific hEDS and also with fibromyalgia. Made a shit load if referrals and finally got me on pain relief that met my needs. That's why I've suggested rheumatology If OP thinks her symptoms fit with hEDS.

Not everyone has all of the symptoms below but if you have most. It's best to get check as during pregnancy and labour, the relaxin hormone plays havoc with an already unstable, stretchy, bendy body. I have 7 out of 8 below

joint hypermobility
loose, unstable joints that dislocate easily
joint pain and clicking joints
extreme tiredness (fatigue)
skin that bruises easily
digestive problems, such as heartburn and constipation
dizziness and an increased heart rate after standing up
problems with internal organs, such as prolapse

What I found helpful was to using a tommee tippee perfect prep and bottle feeding.

Breast feed by all means but also top up with baby milk. Go to bottle feeding full time if that is what helps you.

Also practise swaddling on a large teddy and then swaddle for the first week or so.

All of those things helped me have a baby which slept well I am sure and in turn helped me get through.

Don't do what I did which was cry and cry because I found feeding so hard and I felt disapproval of those around me for bottle feeding.

Do what you need to do get through.

I have ME and have 4 children with additional needs. If I’m honest - It’s absolutely exhausting but I have to ne kind to myself and rest. Sadly I’m crap at that so usually end up pushing on till I’m absolutely on the edge... then taking weeks to recover.

So my advice would be:

Be kind to yourself - rest when you want to not just when you need to

Ask children’s centre about home start volunteer - it could be really useful to you

Oh you poor thing.

I've got RA, Fibro, MG, Adenomyosis, Migraines and IBS.

You have to be the squeaky wheel. You tell the gp what you wAnt yo happen. Get a referral to a rheumatologist, you need your pain levels sorting as much as possible during pregnancy. I took paracetamol every day with each of mine. Take someone with you to the appointments and tell them beforehand what the outcome should be. They're there in case you flag. They can also remember what the doc said. There will be a huge element of 'but you're pregnant we can't do anything' yes true but what's the plan for afterwards.
See a maternity consultant and get it written down that you need an early epidural to prevent fatigue and reduce the levels where intervention happens.

On a more personal side contact adult social care and ask for an assessment for direct payments. Say you a pregnant woman with health issues and might need a parent enabler.
I received this for both my DC. You get given an amount of money to employ someone to help you parent. You might get a numpty at the council who claims to not know or try to say it's under child social care but it's not. The phrase I use is I do not want my children to be disadvantaged by my disability.
You will have to push but you can do it.
With my first DC I employed my mum who helped with everything as long as it was connected to helping the baby. You can't employ your partner/husband but you can employ anyone else.

Good luck. Hope this helps.

Rheumatoid arthritis here. Although mefruittea I have all those symptoms but no bruising...

I suffer with joint pain, "slow" joints and exhaustion. I have a cleaner as I get grumpy with a messy house. I'm rubbish at seeking help though. My mum is amazing .

@Welshmaenad - thank you for your post x That's interesting. I'll see what I can get from the NHS but I guess I may well have to go private. If I can even recover 50% and start work again it'll have more than paid for itself! And more than anything else - it means such a huge amount to have a doctor actually listen and accept that you feel awful and it's not all psychological (yes, I've had that from 3 NHS doctors )

@TammySwansonTwo - yes yes yes!! I'm just the same, I don't go to the doctors because I feel such a waste of resources when I do! , so hard isn't it, I hope things get easier for you. I'll look into private testing as an option if the NHS really won't do anything.

Thanks @SluttyButty. I'm not keen on starting any fad diets, I'm too greedy for that but I'm at the point where I'll try anything if there's a chance it'll work! Thanks for your advice, it's good. x

thanks @mehfruittea. Pretty sure that I don't have EDS but it sounds bloody rotten. and thanks for your replies.

@thetwinkletoescollective, thanks! I'm keen to breast feed if I can, just because I'm lazy, my kitchen is usually a filthy mess and I'm hypersensitive to smells. But if it doesn't work out then I've heard great things about the perfect prep machine x thanks!

@imnotacelebgetmeouttahere - you sound amazing! I can't imagine how hard that is. Thanks for your post x

@Sandinshoes - bless you that's exactly the kind of advice I was hoping for! x I'll definitely look at that adult social care thingy.

Is a rheumatologist appropriate for treating ME/CFS? I thought it was more of a neurological condition?

Hi OP,
I was diagnosed with CFS/ME about 10 years ago but have suffered with it since I was a kid. I’m also currently 4 months pregnant so I can definitely sympathise!

I do think you have to shop around for an understanding Dr. Most of them don’t understand the condition or don’t want to. I have a great male Dr who has helped me for years with my condition and is very willing to help.

However when I visited him after getting pregnant he said “well if you’re tired now imagine how it’ll be with a newborn. Hopefully I won’t see you again through the pregnancy.” I was 6 weeks, had a swollen gland in my groin that had been up for 7 weeks causing pain and I could barely get dressed. It absolutely knocked me back. I was devastated and scared.

I booked another appointment with a female Dr weeks later out of necessity and she was marvellous. So don’t give up after a setback. It’s really tough but they’re not all the same.

I self referred to Dr Myhill (she has a great website with tips and information for sufferers) and got a second diagnosis along with advice.

I’m trying to take the pregnancy one day at a time so as not to feel overwhelmed (stress is a huge trigger for me). I’ve thought a bit about the birth and the advice online for CFS seems to be an early epidural but lots of ladies opt for ELCS. I’m also trying to think of the logistics of breastfeeding. Can I get up every 2/3 hours without really suffering? Not sure.

Thanks for starting this thread, reading the replies has been wonderful for me too!

I bottle fed my first and bf my second and for me bf was much easier, yes all the feeds were down to me but as I found with me firs the eagerness to help with fees vanishes after a couple of weeks anyway!

Learning to nurse laying down was amazing because I could Just lay in bed and watch Netflix. Look up safe cosleeping guidelines and night feeds are a breeze (if the amytriptaline makes you drowsy it snot safe to bed share)

Thanks @icclemunchy, that’s good to know. It’s hard to plan when you have no clue what you’re doing!

Op, I wasn't a routine person at all. But it saved me. Be prepared for non-routine stuff happening and having to tweak a routine regularly. If it doesn't work for you, try what might work for you.

Thanks @Flamingo84! I've contacted a couple of local CFS support groups to see if anyome can recommend a sympathetic and thorough GP because I think I need to change mine.

Has anyone had an early epidural during birth and how did this play out? I've got mental visions of sitting on a bed for hours and then ending up with an assisted birth or emcs.

I had ME when DC1 was 9months - not officially diagnosed for another 12 months.

I just wanted to say that it isn't easy but I got through it and had another 5 years later. DC are teenagers now. I'm symptom free although more prone to post-viral fatigue. I will always worry that it will come back.

I took a high dose starflower tablet, as well as multivitamins and think it helped.

I was diagnosed with myasthenia gravis after 2 full years of suffering severe muscle weakness and a closed eyelid. It then took a further full year to get my fibromyalgia diagnosis. This was after being told countless times it was all in my head, anxiety etc. My neurologist even tried to book me a therapist rather than ordwr any blood tests or an MRI. It took me years to find someone who tested me correctly and found out what the issue was and get me on medication.

I have totally lost all hope with the specialists I have dealt with and people do assume younger women couldn’t possibly be unwell and must be making it up. I am looking to go private now as I am hoping if I pay I may actually be taken seriously. Is this something that would ever be in reach for you? Can’t imagine having to deal with a pregnancy on top of feeling generally crap and exhausted so feel for you.

I take it you’ve had your vitamin d tested? I had all the symptoms you discribe and had low vitamin d. It’s an expensive test so doctors often don’t perform it. I feel like a different person since having high dose vitamin d xx

I was diagnosed with vasculitis last October....it's a rare autoimmune disease which can mimic a lot of things ( including me/cfs) and most GPs will never have encountered it...hence label you with ME
I had/have extreme fatigue, muscle pain, joint pain, swollen glands, red eyes, brain fog....eventually developed a rash which dermatology were able to biopsy which showed vasculitis.( however not all vasculitis present with rash)
How is your kidney function?....(blood or protein in urine can show up in folk with vasculitis)I'd ask for a referral to rheumatology as they were the ones that finally started me on treatment ( steroids and methotrexate)...I'm not in remission yet but relieved to finally have a diagnosis and I'm not a neurotic woman ....I just have to rest when I can and not do anything strenuous
Also ask for ANCA blood test

I have different but long term disability which causes tiredness (medication related) and pain. All spinal.
In pregnancy I had spd and sciatica which left me on crutches from 20weeks. I was referred to the mh midwife since I’ve suffered mh issues all my life and she was brilliant with classes, additional support and referrals, can you be referred?
I was prescribed strong pills during pregnancy and had to withdraw before birth but got epidural as soon as my waters went and it was considered active labour. Vaginal delivery.

I’m sorry you’re suffering, it’s hard when no one wants to pay attention or take you seriously I know

Op, has glandular fever been ruled out? Do you have any pets (toxoplasmosis)? The fact that your glands are so swollen and you have flu type symptoms could still indicate an infection.

Do you have a mobility scooter? If not, it may be worth getting one for the rest of your pregnancy. You couldn't use it with a pram or buggy but you are allowed to wear the baby in a sling and ride a class 1 scooter as it only goes at walking pace/on the pavement so it is like walking (you are not allowed to attach the baby to the scooter itself or carry an older child).

Thanks so much for the replies x means a lot!

@Maddiemademe, @Reallycan'tbebothered how did you get your diagnoses? Did you just have to keep asking for referrals to different specialists until you found one that could help?

I guess I'll just need a really good idea of what I want to happen and bang my drum until I get it. Which seems absolutely crazy given the experience and education behind hcps, and all I have is Dr Google.

Does anyone know of any NICE guidelines/best practices that should be used in diagnosing chronic /autoimmune diseases?

@ilikebread I did have vit D tested, my result was the low end of normal - I think it was 16 ng/ml. I took high dose vitamin D drops after this and I did feel much better for it, but came off when pregnant, and was told by GP to only take a pregnancy vitamin (containing vit D.)

My kidney function seems OK, I've only had the standard pregnancy urine tests done but they test for protein and blood (I think) and mine seems fine so far - but I'm not sure how thorough those tests are?

Thanks for that @Ellendegeneres, that's a good idea, I'll ask my midwife for a referral next week. My current midwife is absolutely lovely but she has no idea about chronic illness of any kind. I think she would refer me if I asked but I don't think she's come across anyone in my situation before.

@Bluesmartiesarebest glandular fever was the one test they did do right at the start and it was negative. But I have been told a few times that I probably have some underlying viral infection that's causing the glands/fever/aches etc, but they can't treat a virus