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

Sorry you are feeling bad. MS sufferer here but I was only diagnosed when dd was 4. Clear that my struggles including with bf were to do with a relapse caused by an infection due to poor hospital care when she was born.
If I could go back in time, I would tell myself to get as much info as possible on pregnancy and having ms - fatigue is a big part for me. Don't compare yourself with others and how smiley and perfect they all seem. They are either good at faking ok or they are having a good day. It used to really upset me when I saw how easy everyone seemed to be having it.
Again, if I could go back in time, I would give myself a hug and say that they didn't have to battle what I was battling as well as the tough everyday of being a new mum.
I would also tell myself not to expect
much from hcps. Regrettably, I have lost faith in the NHS because of my experiences. Perhaps if I had not pinned all my hopes on good care, poor care would not have upset me so much.
Be kind to yourself. Ignore all the people appear to have it all Sussed out. Listen to hcps but follow your own good instincts.

No advice on chronic illness sorry, but just wanted to say I had a c section and it was great. I personally would choose c section again anyway but if you suffer from fatigue I would say that might be a very good reason to consider one. In my experience hcps are very biased against c sections and will only tell you the cons not the pros.

I have CFS, fibromyalgia, underactive thyroid and currently undergoing diagnosis for an autoimmune condition on top. I have a 10 month old. My biggest worry during pregnancy was that birth itself would be so tiring that I would be wiped out for a long time afterwards and struggle to look after the baby. I opted for a natural birth anyway (instead of an elective CS) after talking to the anaesthetist during pregnancy. Circumstances conspired and I actually went through 5 days of crap in hospital with practically no sleep before an emergency c-section. I will absolutely go straight for the c-section if we have another due to my experience. But if I'd gone for the elective CS I might always have wondered, felt like I missed out. I am a bit disappointed as it is but in the end there "was no way this baby could ever have been born naturally" according to the consultant, so there was zero choice for the safety and survival of us both.

But I was also told by the NHS specialist who diagnosed me that "the NHS can't/won't help you unless you're permanently in a wheelchair", as well as "you're an absolutely classic case, I don't know why it took so long for your GP to refer you" (around 3 years). She also gave me the "there are people worse off than you" line. It's not a competition and I never claimed otherwise, or even complained; I just wanted help. You will need to be vocal if you know what you want if you are going to get anywhere OP, so have a good think about what you think might help you and have a chat to your midwife, and don't let her brush you off.

Agree with c-section suggestion. Agree that hcps will do anything to avoid giving you one.

Do you have children’s centres in your area? You sound like a really good candidate for some early help from them in terms of bonding, breastfeeding, parenting classes etc. It’s also worth self-referring to the health visitor team now if the midwife won’t do it, to get early contact in place. They should come to see you before baby is born in theory but many won’t because of their large caseloads so only prioritise those in need. If you let them know how you’re struggling and your fears, they can arrange to see you sooner. What are you doing in terms of birth preparation classes? I don’t really think an obstetrician will be of much use to you if I’m honest - on the whole they aren’t great at looking at things holistically and won’t have any specific concerns about you presently. Their general take home would likely be ‘we’ll see what happens in labour and go from there’ at best, and at worst completely medicalise your care with no real need.

Hi OP. sorry to hear that. Who diagnosed you with ME (assume not GP?) and are you still under the care of whomever diagnosed you? If not, have you asked to be referred back to them?

If you’ve had no specialist referal demand one and don’t leave that GP office till you get one!!!

Tell them you are not satisfied with the diagnosis and ask for a referral to a rheumatologist. I was fobbed off for years and years before finally getting a lupus diagnosis last year. I was never even given the basic tests for it by my GP.

persist!!!

have you had an ana blood test done? Not standard I don’t think.

Hi op

I was diagnosed with Cfs before having my first dc, I chose to have planned sections with both children

My first pregnancy with dd was awful and I felt much better after having her

From a professional point of view knowing what I know now 17 years down the line I would say

A. Take a damn good b vitamin, I use Jarrow b right
B. Make sure you’re getting all other minerals and vitamins in too

Rest when you can, although it will be frowned on by some try and get baby into a routine early on

I used Gina ford and it literally was a life saver, both babies slept through from 6 weeks and still do now in their teens

Don’t sweat the big stuff, a clean house is NOT a priority

Don’t put a brave face on it, if you need help tell people

Sleep when baby sleeps

Live 100% of the life you have

I also agree that GF saved my life. I couldn't afford to wing it. I needed to be told that now is a good time to open the curtains etc. I adapted the suggested routines to fit us. I didn't beat myself up if things went a bit squirrel-y now and then.
Dd is a great sleeper who thrives on routine. We mix it up now and then now she is older.

I can't advise on the medical side but I had a mobility issue a while after having DD and had a lengthy time where I struggled. It really bothered me asking for help but I look back now and wish I'd asked people more!

Getting a cleaner was a brilliant decision, if you could manage it, so you don't need to exhaust yourself and can just focus on your baby.

Could you see an alternative therapist?

I think a properly qualified nutritional therapist could help. Can you get your vitamin d levels checked, plus B12? What is your diet like? I think a huge amount can be done and GPs are, in the main, utterly ignorant on this stuff

I have a sleep disorder of some sorts (not sure what it is yet, could be narcolepsy)
I was the opposite to PP. A clean house was a must to keep my mood up. The worse my mood is the more tired and low energy I get. So we got a cleaner.
Also, co sleeping worked best for us as it meant we got the most sleep.

The problem is CFS is really a diagnosis that comes when everything else has been excluded. There are no obvious cure, so very little doctors can do.

The best way you can help yourself is by checking that they have indeed exhausted all other possibilities. For instance, Vit B12 deficiency (blood test alone is not reliable but many GPs don't know this), or something even more obscure, Lyme disease. These two conditions alone can result in unexplained exhaustion and many of the physical ailments you've noted.

What will happen later in your pregnancy, birth and when the baby is born, no professional can say. I know exactly what it is like to be so desperate to be told that things will get better and that there is something you can do to do so, but wanting it so badly doesn't mean that anyone has a response.

My way of coping is to try to live life as much on a day to day basis so that I don't let anxiety make the situation worse. I have bad and better days and so far, I haven't been able to identify what makes it so. I have therefore started a diary to see if at some point, I might pick up a trend. Cognitive Therapy can help a lot in learning how to cope with the lack of control/answers.

Not got a chronic illness, but my father does. I just wanted to reassure you that you'll cope, and can still be a phenomenal parent. Dad's ms has always been part of my life, but not a shadow, or a blemish, just a part of it. All the best!

Hi op, I have hypothyroidism, CF and Fibro among other things.
Ask your GP surgery for a copy of your blood test results and
post them on here if you can.
The ranges for hypothyroidism have changed by a large margin in the
past few years so what was hypothyroidism is now 'normal range.'

I have fibro, managed okish in pregnancy but kept some of my med s till the third trimester when I came off to avoid dependancy in baby. I found I was okish in the early days, lots of sleeping whilst baby did and bf went well (you can bf on amytriptaline and most of the drugs, lots of GPS don't like it but speak to Wendy at the breastfeeding netweek drugs helpline and she'll sort them)

I had a section, ment to be planned but ended up emc because LO was distressed but I found recovery fine and much better than from my first where I'd laboured for 3days first!

I have hEDS, fibromyalgia, anaemia, vit B12 deficiency, hypo para thyroidism and a few more. I collect labels like badges.

I was only diagnosed with all of that after pregnancy with DS. Agree with PP, if you have not been diagnosed by a specialist, then you have been fobbed off. Have a look at the symptoms for Elhers Danlos Syndrome, only after I was diagnosed did all the symptoms click together for me. Including lots of medical history I did not give (as was not asked). Ask for rheumatology referral if you think EDS is likely. hope it starts to ease up for you.

Can I just ask, out of curiosity, for those diagnosed with CFS/ME or Fybro AND other conditions how they got that diagnosis when the other conditions are known to have the same symptoms?
?

I had MS (used to, did HSCT so thankfully gone now) it was triggered by pregnancy. B12 and high dose D3 used to help and bizarrely cherry coke used to give me a boost, normal coke didn't work but cherry coke did, just until I could rest but it would hold off the fatigue until I could get home.

Why on Earth have you not been referred to a rheumatologist? 😱

swingofthings They do loads of tests, physical, lumbar puncture, mri, brain test where they stick things to your head, after all the tests they collated them and worked out what it was.

My dsis was bedridden for 4 years with ME, previously a highly functioning nurse. As a nurse with private healthcare she ensured she had every medical test going in a search for answers. We drove all over the country seeking medical opinions. Eventually she sought an opinion from Dr Sarah Myhill in Wales, this Dr is considered slightly contoversial and the gmc have investigated her methods. The treatment prescribed and dietary advice was life changing, she now lives a normal life. worth looking into when no one else can offer anything.

Hey OP,

Sorry to hear things are crap. I had ME / CFS but have been 99% better since 2011. Where abouts (roughly) in the country are you? I was very lucky that at the time I was able to access a specialist CFS service and I swear that is what made the difference and why I was one of the lucky people to recover.

Can you find out what is available nearby and demand a referral? I refused to leave my GP practice until someone listened. They did

Also try dietary changes. I cut out meat, diary, sugar (except the CCoke), processed foods (OMS) and I think it helped.

Oh you poor love.

I was also diagnosed with ME last year, after 4 years of fighting for a diagnosis. My children are older though, so I have no advice about coping with a baby, but my symptoms do mirror yours and I can imagine how rotten you are feeling.

You need a referral to pain clinic, but I know that in my LHB wait lists are very long. I paid £170 to see the lead pain specialist for my LHB through his private practice and he was wonderful, he was the one who actually diagnosed me after being repeatedly dismissed by my GP.

Some of the things he suggested for me were acupuncture, massage and yoga, so I don't know if you're in a position financially to start sourcing those things, or if indeed you could afford a private consult like I had to, but I have found that GPS know very little about ME and you really need to go to a specialist. They will also advise about any medication you can take whilst pg/bf and write to your GP to prescribe them.

Wishing you a good outcome xx