Any clue why I feel so shitty so much of the time?

[CaraVann]

I can't work out if I feel the way I do due to a myriad of issues or if it is simply one thing? My GP is next to useless and has left me to it.

I am 51 and in perimenopause which is certainly not helping my issues BUT I was feeling this way a long time before peri hit.

Firstly, I have a history of gynae issues and from the day my periods came at 12 they were very heavy. This resulted in years of anaemia and low iron stores. I have had various gynae procedures over the last 12 years and polyps have been removed multiple times. I had a uterine ablation 2 years ago which has failed and I have since found out that I actually have endometriosis. I had iron infusions 2 years ago and no longer have periods due to the ablation so my iron levels are now supposedly 'normal'.

Due to being in peri I have tried HRT but it has exacerbated the endo pain so I had to stop it.

I have also suffered from IBS for the last 26 years, not sure if its related to the endo but won't know for sure for at least a year as I am on a NHS wait for a laparoscopy but nonetheless I have lower gut issues and a very unpredictable gut (mainly IBS-D). I have had almost all the gastro tests possible and all come back as ok ( 2 colonscopies, gastroscope, coeliac, bile acid malabsorption etc).

Alongside the lower gut issues I have upper digestive problems too. Regular (almost daily) nausea, burping, acid and general upper discomfort.

I really don't know if the above has any effect on my other issues but I also suffer regularly from the following and have no idea why this could be,

Regular, almost daily exhaustion. I feel so so tired despite getting regular 8 hours a night.

Not sure if related to the above but I regularly feel very weak and shaky, not so much physical weakness, I still have strength but it is as though a tap has been left open and all my energy has drained from me. I also feel as though I have internal tremors, hard to explain but it is similar to a feeling of shock, like if someone stepped out in front of you when you were driving, you suddenly had to do an emergency stop. It is similar to that feeling you'd feel immediately after such an event.

I am also very bendy, always have been but not in a good way. I ache a lot and find my elbows, hips and lower back really hurt a lot. I have mentioned joint hypermobility but GP said many people are hypermobile and that was that.

I suffer from an almost permanently blocked nostril and feel as though my mouth and back of throat is raw and on fire (although looks fine). Not sure what this is but wonder if it is some kind of acid issue from my functional dyspepsia.

Tinnitus which drives me to insanity.

TMJ disorder which I have had for years.

I had a ct scan in 2019 which picked up a very large kidney cyst (larger than the actual kidney) which I had scanned for 2 years then discharged as being just one of those things. The ct scan also picked up some other findings such a a few liver cysts, a small adrenal gland cyst and lower disc degeneration. Was told these were all incidental and insignificant but thought I would mention them.

Had full blood panel taken last year. All came back as 'within normal range'. All kidney, liver and bone profiles good. I notice though that my white blood cells are always low, have been for many years but no one has ever explained why that could be. My B12 is on the lowish side of normal and so to are my iron levels but GP says all ok because they fall within NHS acceptable levels so I don't know what else to do there.

I live as healthy as life as possible. I am slim, I don't drink or smoke, in fact I only drink water. I follow a special diet to help my gut. I exercise, meditate and do all I should be doing for a healthy life but still feel like utter shite every day.

Can anyone relate? What can I do to feel better? Any suggestions.

So you are hypermobile. Has your GP checked you for ehlers danlos syndrome?

Have they tested for an underactive thyroid, T2 diabetes or Vit D deficiency?

My B12 is on the lowish side of normal and so to are my iron levels but GP says all ok because they fall within NHS acceptable levels

Which are frighteningly low. The U.K. set b12 normal levels as a lot lower than other countries, and you can still be symptomatic at the low end of normal. Same with ferritin. ‘Normal’ can be 15 for some labs, but it needs to be over 70 for normal hair growth. I didn’t even have any leg hair growing under 50.
Maybe book into an aesthetics place and get a few B12 shots, it isn’t something you can over dose on, and see if you can boost your iron. Iron bisglycinate has better bioavailability than ferrous fumerate/sulphate and your body boosts levels better by only taking it on alternate days. Vitamin D can also cause similar symptoms but isn’t widely tested anymore due to cost and the fact that most people are on the low side so they may as well just advise people’s to supplement.

Peri is a killer though and can start around 10 years before you actually hit menopause.

What special diet? You may be missing vital nutrients.

Well according to my GP, being a bit hypermoble is common and she said no more. I’m going to push at it though as my ds is almost 19. From the age of 6 he’s had regular knee subluxations. GP sent him to a paediatrician and we were told he’d grow out of it well he hasn’t. He’s off from work this week following a third very painful subluxation in 2 weeks. He saw a physio on Monday who was in no doubt he has joint hypermobility. My mum had issues but was never diagnosed.

My thyroid has come back ok (T4 13.5 TSH 1.5). Vit d is 45. I’ve never been tested for T2 diabetes.

My records said range for b12 is 180-1000, mine are 280 but as it’s in range GP says it’s ok, no further action?

Ferritin was 3 before infusions it’s now 30. Again told all ok.

I do take vitamin d supplements and have done so for a while.

Think I need to look into getting some b12 shots to see if I feel any different.

Peri has most definitely exacerbated everything and thrown in more crap but I have had most of the symptoms I’ve described since my 20’s!

I keep telling my GP that I am probably nutritionally deficient, they just tell me to take a multivitamin. I follow the low fodmap diet and try my best to have as wide a range of foods as possible but it’s hard when a lot of foods upset me.

I am seeing a private dietician soon so hopefully she can help me in that department.

What was your b12 level? Our levels in the uk are set shockingly low so if you are sub-200 which would leave you on the low side of normal, it could well be b12 deficiency. Added to that, all the digestive problems you have are a classic cause of b12 deficiency because any issues in your digestive tract can mean you don't absorb it properly. Have you been checked for coeliac disease?

The hypermobility, TMJ and gut issues all point to EDS.

Me and DD both have EDS. I have a hiatus hernia too as well as IBS. DD on top of hers also has Hypothyroiditis, pernicious anaemia, heavy periods, low iron, and other issues. EDS is the gift that keeps on giving. There are so many comorbidities. It's a connective tissue disorder at the end of the day and affects all of the bodys systems.

Google the EDS diagnostic checklist and also the EDS GP toolkit and show the GP. It's time to join the dots. Also look at EDS.co.uk for support.

There is so much gatekeeping with EDS.

I was told I'd grow out of it. I was also told 'lots of people are bendy' etc. I was finally diagnosed aged 49. DD was diagnosed by Genetics aged 10. It's better to know, from a management / prevention side of things (seeing a physio, knowing what to avoid like Yoga etc)

B12 is 280
Folate is 6

I’ve had biopsies for coeliac disease, they were all clear.
I do have small intestinal bacterial
overgrowth though and have read that can be caused by b12 deficiency?

I keep telling them that I think I could possibly have it but no one is listening. I am so fed up with my healthcare. It took over 20 years to find out I have endometriosis and then I’m shoved on a year long waiting list to have the exploratory surgery. It’s so frustrating isn’t it?

I have tried doing the Beighton scale online and I do seem to score highly but I’m not sure if I’m doing it right?

Have a Google of EDS and PoTS/autonomic dysfunction. I relate to so much of what you’re experiencing - sending hugs. It’s really hard work feeling this way.

Here's the official Hypermobile EDS diagnostic check list. It includes the Beighton score.

https://www.ehlers-danlos.com/heds-diagnostic-checklist/

Here is the EDS.co.uk website, too. Lots of useful info.

I forgot to add that I also have PoTS, too. Another common comorbidity. PoTS is diagnosed via a tilt table test, but you can check yourself at home if you can record your heart rate whilst lying down, then again whilst standing. If there's an increase of >30 then it's likely PoTS.

It's exhausting. I absolutely hear you. So many people are fobbed off for years. Mostly women. A lot of women are also misdiagnosed with Fibromyalgia.

https://www.ehlers-danlos.org/

Thank you for this.

Look at chronic fatigue syndrome/ME. Being hypermobile and having endometriosis are common with this illness too.

I had similar symptoms op. Had all the tests and scans and it came back with gallstones and fatty liver.
I also have EDS diagnosed by a rheumatologist.

Maybe ask for a sleep analysis test. You might have sleep apnea which is exacerbating all of your other symptoms.

I have often wondered about this. I will ask my gp.

I’ve had various us scans, a ct scan, a bile acid malabsorption scan and a mri but my liver and gallstones come back ok but I do have another abdominal is it n a few weeks which I’ve requested so will see if that flags up anything new.

I always feel that I sleep well (my sleep tracker shows that I sleep quite well), dh has never mentioned that I stop breathing in my sleep or anything similar (I often fall asleep on the sofa too).
Dh on the other hand! I’ve badgered him to look into this for years, he most definitely has it.

Sorry if I missed anything you've already said on this op. Just wondered what your diet is like?

I get weak and shaky, nausea and dizziness when there isn't enough sugar in my diet then I eat things like a banana or a biscuit and can feel better quite quickly. I can't do the no carbs diets. It could be the diet you are following is too strict on some things.

I’ll be honest, it’s not the greatest.

When I say this, it’s not because I eat rubbish or take aways all the time or anything like that, in fact I very rarely eat fast food (upsets my stomach) but as I’ve said, I have a fear of food and would avoid it completely if I could. I only eat to survive.

I am ‘stuck’ on the elimination stage of the low fodmap diet and probably eat around 10 foods on a regular basis. Not ideal at all but due to my fear of food that’s as good as it gets atm. I am in no doubt this is having a detrimental effect on my health.

Over the years I have removed lots of foods that I believe have caused gut issues.

I now eat only turkey and salmon with occasional ham, quality sausages or plaice/cod as my main protein sources. Carbs are gf oat crackers, potatoes and very occasionally rice and rice crackers. I will eat cucumber, tomatoes, peas, green beans, carrots, radish, olives. Fruit upsets me so I avoid it all, even low fodmap foods. I flavour my foods with chives, vegan mayo/salad cream (eggs now upset me) and tom ketchup. Everything I eat is low fodmap and at low fodmap servings. I avoid stacking any fodmaps and I avoid most amber or red fodmap foods.
I only drink water and eat very small portions on a side plate as I get full, nauseous and bloat very quickly.

I know my diet is far from ideal but I truly despise food, I see it as the instigator to all my gut issues, when I don’t eat it allows my gut to feel rested. As soon as I eat I feel unwell. It is a horrible vicious cycle that I just can not get my GP, gastroenterologist or nhs dietician to see how much this is altering my life for the worst.

I have an appointment next week with a private dietician, my discovery call with her was positive, she appeared to fully understand so fingers crossed. It is no way to live and is making me so very depressed. It frustrates my dh and we have many heated discussions over it. I just can not get anyone to understand my predicament. I don’t live like this through choice.

I had a lot of fatigue and severe bowel and gastric issues that ruled my life for a decade until I had a hysterectomy and oophorectomy and then they all disappeared.

Funny thing was, my gp, gynaecologist and my surgeon - three medical professionals - all said over and over again that my frequent nausea, vomiting and IBS were totally unrelated to my gynae issues. And yet it all stopped two days after my operation.

Now that I know I have endometriosis (suspected this for years as my sister has it but it all fell on deaf ears), I am convinced my gut issues are related.

When I had my consultation a few months ago with the endo gynae the first thing I asked was ‘Are my daily digestive issues related to the endo and adenomyosis’, I wanted to discuss this in full but he put his palm up to me and said no! Not related at all and he wasn’t here to discuss gut issues only the gynae ones and I was shut down just like that! Said the MRI detected deep endo and adeno but no mention of bowel endo.

I have joined lots of fb support groups for endo, adeno and failed ablations and found so many struggle with gut issues.

I so wish this had been picked up years ago, maybe then it wouldn’t have had such a detrimental effect on my mental health.

Gynae also went out of his way to put me off having a hysterectomy.

OP, I have a lot of similar issues, Hiatus Hernia, gallbladder, IBS, GORD, T2 diabetes. Age 52, also Peri.

Often I feel very jittery and like I am shaking inside. My head feels heavy and I feel dizzy or lightheaded. I lose my balance often. On the outside I am not shaking at all. I hate the jittery feeling in my head. It's interesting to read about the internal shaking you get

Some days my brain feels like its shaking in my head and my head feels like it is going to explode.

The doctors don't have any answers :(

Sorry that you were shut down in a similar way by your consultant op.

It seems so short-sighted not to take a more holistic approach.

Obviously, I'm not a health professional, but even I know that many women have bowel issues during their periods and some women have uterine problems caused by bowel adhesions. I know that prostaglandins are involved in the dilation of blood vessels in the womb that can cause bowel pain, diarrhoea and pain in the lower abdomen.

I felt really let down in retrospect because my life was effectively on hold for a decade.