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

Interesting that you have low vit d. It’s amazing how much your body can react negatively to that. Is it worth you asking your doctor what the maximum dose you can take during pregnacy? Because pregnacy vitamins don’t contain much. You need D3 specifically and I’m not sure this is what’s contained in pregnicare etc.

You need to shout as loud as you can. It took months of pain for me to decide enough was enough and start kicking up a real fuss. I changed consultants a few times as my first one took an instant dislike to me, and even when I had a definite diagnosis via a very painly EMG and antibodies in my blood test for myasthenia, she still tried to fob me off with being overy anxious .

Never stop asking for help. Even when it seems noone is taking you seriously, keep on at them all the time. Do you have any follow up appointments or further testing booked? I spoke to the appointment booking team and managed to change my consultant via them without any problems. It is still hard work to get any help but my gp is great at trying to help me manage my pain. It sounds stupid but you have to almost make a nuisance of yourself. Is there another midwife available who does know anything about chronic illnesses?

painfuloverly

Thanks.

Last night I sent an online GP consultation form off to my surgery, with an exhaustive list of symptoms and whatnot. Just had a reply telling me to book at least a double appointment because my problems are clearly more complex than has appeared in the past

One of my lovely neighbours who has rheumatoid arthritis has advised me to see a particular GP who helped her get referred to the specialists she needed.

I've also contacted a couple of ME/CFS clinics in the area and asked for names of chronic illness specialists. There does seem to be a good clinic about an hour away, the receptionist said that the first thing they do when they get a referral is to thoroughly review the case to check that it actually is ME that the patient has. Which sounds just perfect for me

So things are finally happening!

I shall go to my GP and be dignified and stubborn and insist on full blood tests including vitamin D, thyroid, ANA, etc. And I'll ask for a referral to a neurologist (by then hopefully I'll have a name) and take it from there.

Not sure what to do about a midwife. I'm going to ask my current one for a referral to a chronic illness specialist OB to talk to. If they aren't any good then I'll have to look further but I've got to start somewhere.

Hi op.
I've got RA. So I completely understand your frustration regarding doctors understanding. Last week, I was told I had too much time on my hands and shouldn't worry too much about my health!! Well I'd love them to walk my dog for me on their lunch break or on their way home when I'm flat out and can't move from the sofa, I had flu on top of everything else and expect more understanding than that. It doesn't get easier but my advice is rest when you need to. Cut out one way friendships, and download some cleaning apps so you don't feel overwhelmed with chores. Big hugs.

Good work OP. Sounds like progress. Can I just ask, why are you asking to see a neurologist, not a rheumatologist? It sounds like it should be a rheumatologist you are seeing possibly.

Thanks thirtyplusone. I presumed a neurologist would be best because from my own list of symptoms, ME/CFS or MS are the best fit and for those, the NICE guidelines suggest a neurologist.

But I'm willing to be told that I'm wrong!

Also - nope I don't have a pet, it's my dream to have a dog but I don't think I could look after it properly x

Hi, you have had lots of good advice already but I was sort of 80% recovered when I had my first DS. I was very tired the second half of pregnancy and the birth ended up being an EMCS. I had an epidural very early on though. I would say I found the first few months hard and I did breastfeed for the first three months. With my second I did it for six months. It was tiring and my one bit of advice would probably be to do mixed feeding after the first few weeks. I think my nutrient levels were just so low. I would also try and pay to see a proper nutritionist (ION) qualified. They will get you on good pregnancy safe supplements.

Also, get your partner to take a week or two extra leave on top of paternity. Then, you can rest as much as possible post birth.

Hope it goes ok xx

I have R.A. had a massive flare after birth of second son. Had had obvious symptoms for years but continuously fobbed off by NHS. Live in Spain now thank God where if you are in your early thirties and struggling to.climb stairs despite being 8 stone, physically fit , don't smoke don't drink dot take drugs they actually bother to take a blood test. To compare.....NHS 10 YEARS of going to the G.P with pains in my limbs sometimes rendering they lb immobile for days or weeks, swollen hands, morning stiffness...given ibuprofen and a tellingoff (naproxen onelce but still "this is not a medical.emergency and we all get achey sometimes.....see the pharmacist for anti inflammatories the urgent appointments are not for aches.....") Spain - Monday saw go with aches.... Wednesday blood tests Thursday phone call.with results following Monday first appointment with rheumatologist......within a month I had had 3 appoints with rheumatologists, pneumonia vaccine, 2 rounds of further blood tests, radiography on my hands and feet, I was started on steroids and naproxen while they designed a long term.trwatment plan which I am now on and comfortable with......9 months later on a very low dose of steroids hopefully soon to be removed plus R.A. meds and see rheumatologist every 3 months plus have phone contact whenever necessary with rheumatology nurse. Have been put in a clinical study so I get extra monitoring on top.
They have given me a new lease of life.
So.my advice is...live in a country where the health service is not in tatters....failing that.....push HARD forma referral to a rheumatologist. It's absurd that you are being told.to put up and shut up but sadly it's not surprising.
.....

So just to update you all. I managed to get an appointment with another GP who has been much more thorough, he did another full set of blood tests including thyroid etc.

Basically the results are all in the comfortable, normal range, except for two inflammatory markers which are only mildly out of the ordinary. Because of this he can't diagnose me....apparently pregnancy can cause these anomalies, but it could be something else e.g. Lyme or myasthenia gravis, so he's asked if I can go back in August after baby has arrived and redo the tests, plus a couple of extras (which they can't do now because pregnancy will skew the results.)

So I'm waiting for that before I can get any referral, diagnosis or treatment. GP has ruled out vasculitis, MS, lupus, rheumatoid arthritis, vitamin deficiencies and thyroid problems which were my main worries because they could cause problems for baby.

I have been referred to a ME/CFS specialist to discuss what's best for delivering baby, I just want to speak to a hcp who knows what they're talking about re. autoimmune disease and childbirth, plus I've been seeing another midwife who is pretty patronising about the need for ELCS/ early epidural (you're perfectly healthy, low risk, no reason you can't cope like everyone else ) so I'm hoping she'll be less high handed if I can show I've done my due diligence, so to speak!

Anyway thanks so much for all your help ladies x and I'll update again when I've heard more...

Sorry OP but I find it bizarre that you don’t have a pet because you couldn’t look after it properly but you are having a baby

I have hypothyroidism and lupus and am pregnant with number 3. I also work part time in a physically demanding job and look after all the housework. Most of the adult population have low vitamin d - even my husband has and he works outdoors!

While you need to be kind to yourself, you also need to be realistic and work out a plan for when baby comes

What a horrible thing to say discoball. Who do you think you are to make judgement on OP like that? I’m honestly shocked reading your response.

OP, pleased to see the update I have been thinking about this thread. Glad your making some progress even if it’s not an answer yet. Great news on specialist referral. I’ve not seen my obstetrician yet but have the same concerns regarding my birth plan.

A gp can't rule out lupus, Ra, vasculitis etc...

You SHOULD be referred to a rheumatologist NOW because there are long waiting lists. Ffs I get pissed off with GPs deciding what someone's got when there are specialist doctors who decide who has what. And you can have negative results and still have the diseases!

Why is it horrible though? A baby is going to be way harder than a pet. As I say I surfer with issues myself. I understand both sides. I think OP needs to focus on not only the birth but on the day to day management of having a newborn baby.

OP I would imagine they will want you to labour naturally unless there is a very good reason why not. It is better for your recovery (more often than not, obviously not for everyone) I have had both c -section and a Vbac and I will try for another vaginal birth this time. Yes it is physically demanding but the recovery after a c-section is too.

Hi OP, mother of two here and I have epilepsy.

I was immediately referred to a Consultant and labour choices was one of the first things we discussed. She said the final choice was of course up to me but she advised I have an ELCS as the impact of labour may induce seizures.

I was also under the care of an epilepsy nurse throughout my pregnancy who I saw every 5-6 weeks to have my medication levels checked and dosages changed etc and also she just generally kept an eye on me to make sure pregnancy wasn’t affecting my epilepsy. She did advise me that breast feeding may not be the best idea due to the lack of sleep I would be getting and the risks of seizure occurring with sleep deprivation.

I was very worried about how I would cope after the baby was born but due to my epilepsy I was advised to not be alone with the baby for 6 weeks due to an increased risk of seizures during that time. As a result it was arranged with my family and my DH’s family when people could come and be with me and they took it in weekly shifts to be at home with me whilst t DH was at work. Having someone with me all the time was a HUGE help and the weight of the baby/housework was much lighter on my shoulders as it wasn’t a load I was carrying on my own. My epilepsy nurse saw me twice after the baby was born too in order to make sure I was coping and that my health was stable.

When I was pregnant with my second everything was the same and things went fine that time round too. My son is now 8 months old and I found the sleep deprivation and recovery much easier to cope with this time round!!

Somehow things will work out but please go back to your GP and ask for a referral for more specialised care and advice.

Thanks for your replies. x

Discoball, baby wasn't planned, condom and pill failed. A termination isn't something I'd be comfortable with (no judgement on anyone who is). So baby is on her way and despite my long moaning posts above, I can't wait to meet her! I know I'll need a plan for after she's born, that's why I asked in my OP for advice from people like you and all other posters on here who manage and cope well.

BTW the other reason we don't have a pet is that DH is allergic to cats

I'll see how I get on with this ME/CFS doctor and see what they advise. If they can't help then I will be pushing for referral to a rheumatologist for more specialist advice/care as you say.

Thanks again ladies xx

I was diagnosed with ME a long time ago, but recently discovered I have Ehlers Danlos and POTS (postural orthostatic tachycardia syndrome). A lot of the POTS symptoms are similar to ME, but the way it is diagnosed is to check if your heart rate increases more than 30 beats per minute when you go from sitting to standing. It might be worth looking into that. I had an elective C Section for my last pregnancy and I would definitely have it again. My advice would be to get as much help as you can and rest whenever possible. Good luck and enjoy your new baby!

Have they given you a care plan to deal with the spd? I only ask because I had it with my 3rd and 4th pregnancies in 2002 and 2006. I am now unable to do most things unaided because I never had any treatment following the births. I take a huge amount of morphine daily and rely on my family to help with everything. I know this wasn’t your main concern but please be aware that without correct treatment you may be left permanently needing a wheelchair.