What is wrong with me?

[worktired]

I am physically exhausted. My body aches all the time. I don't sleep well as the aches & pains wake me up.

I have zero energy. I'm overweight & need to exercise but even walking a couple of 100m makes me struggle. I've tried swimming & Pilates, but swimming is painful on my joints & my movement in pilates is so limited (& causes me pain) that it's not worth me bothering (I did Pilates for a year & found this got worse, not better).

I'm really limited in what I can eat. Carbs (rice/pasta/bread) upset my system (but I test negative for coeliac), fat upsets my system, sugar upsets my system.

I have diabetes and PCOS - even with help from my hospital specialist, I can't get diabetes under control. We have tried everything out there - the newer drugs make me itch (forxiga) or mess up my otherwise unpredictable digestive system (ozempic).

I also have fatty liver disease & high blood pressure, which all point to metabolic disease, but there doesn't seem to be any treatment for these that I haven't tried!

I've had many tests, thyroid, hormones etc but everything is negative. I was on HRT for a while, it didn't feel like it made a difference (in fact I put on loads of weight around my middle after starting it) I stopped it to have some tests done, but haven't restarted it as I'm not sure what the point is.

Anyone have any advice??

The main thing within your control is weight, though PCOS can make it difficult to lose weight, amongst other things.

https://www.healthline.com/nutrition/unintentional-weight-gain#3.-You-have-a-sedentary-lifestyle

Have you ever been on metformin for insulin resistance?

What I would do is invest in yourself, buy a treadmill for the house, even a cheap one that slides under the sofa/bed would do. Sign up to weight watchers or slimming world app. Buy a fit bit that can track sleep as well as steps.

With all of this you can start to choose healthier options, you’ll know what is going on with your sleep and you can gradually increase your step count. Info on how to do that here How many steps to improve your fitness level? https://www.healthline.com/health/how-many-steps-a-day#to-improve-fitness

Easy does it, work on the diet primarily, lots of fruit, veg and wholegrains, eggs are great.

The walking will build you up gradually to a point where you can undertake 30mins exercise a day but that might be some time away.

There is no magic fix for this and you may have increased pain with trying to be more physically active, take pain medication. You need to try and increase your resilience to get the weight off because it is putting your body under too much stress.

Try and take pain meds before you go to sleep to allow you to sleep through and invest in the best possible bed/mattress you can afford as the sleep disturbance will make you feel really unwell and puts weight on. Agree on the HRT you can end up with a lot of tummy weight and not much benefit.

NHS primary care (GP services) in England can be fairly quick to rule out thyroid disease on the basis of one blood test. It took three repeats and a full panel to detect mine and I'm still unsure if I'm being adequately medicated.

So asking for a full thyroid panel (including antibodies) might be worth exploring. (They are also available privately, using NHS phlebotomy services, in many parts of England.)

Also, for your guts, and many sympathies there, OP , have a look at low FODMAP. It really helped me when I first explored it two years ago. I also lost weight.

May I ask your approx age?

I have an autoimmune condition.

In addition to the above, you may be interested in Gabor Maté’s book ‘When the Body Says No’.

It’s all about the link between stress and the body.

Thanks all, to answer a few questions:

• I've been on the max dose of metformin for many years. It doesn't seem to do much good.

• I've tried all the diets out there. I tried the low carb fast 800 diet for 12 weeks (the one encouraged for quick weight loss etc) and lost absolutely no weight at all. (10 years ago I did a low carb diet and lost a few stones, so this was very disappointing to find that this method no longer works for me).

• the other annoying thing is that some foods make me so ill that they go straight through my digestive system without passing go - but I still don't lose weight!

• I do need to exercise, I completely agree. I just can't see how. Just walking a small distance causes me pain and when I get home I just collapse on the sofa. I make the effort to go out with kids etc, but it takes a huge toll. On a daily basis I can manage as I work from home, but after work I just crash. I tell myself that if I didn't have to work I could perhaps find a way to pace myself through exercise, but until I win the lottery that's not going to happen!

• I'm taking strong painkillers at night, but still sleep badly because I wake up with pain.

I sound like a dead loss don't I??

I think FODMAP is worth investigating - if I can find healthy food that won't wreck my digestive system I'll probably feel a bit better.

Are there any supplements that would be worth taking to try to get my energy up so I can do more?

Other questions I missed:

• I'm late 40s

• I think stress is a major player here. We've had 12 years of on/off traumatic events and I can really see the physical impact of stressful events/conversations through my smart watch (heart rate) and blood sugar - they both go through the roof (& blood sugar takes forever to come down). I do my best to do relaxation/meditation & actively try to not get stressed, but even if I don't feel stressed in my mind, it shows up in my body's subconscious response!

Thank you all - it's really helpful to be able to talk about this.

I tried the FODMAP and realised once I started reintroducing food into.my diet,that some of my favourites such as cabbage,plums and pears are now a no.no. I have also cut gluten out of my diet too. Re pain I.understand,sometimes leanin an elbow on the desk hurts. For years I was told had suspected Lupus,but now I.have been told it is fibromyalgia. Have these conditions been.mentioned? Hope u.get some pain.free peace OP.

I’m so sorry OP, this sounds really tough. Stay strong, there will be light at the end of the tunnel. Did they test for Lyme disease? Were you ever bitten by a tick?

Have you had your vitamin D checked. Also B12 levels as metformin is linked with B12 deficiency.

Try the Keystone Approach by Rebecca Fett. There a lot on probiotics for auto immune disorders in there. Omega 3 is also good for them. Lastly everyone in western world is deficient in magnesium so have a read on the benefits and see if that could be added. I added all these for pain (assume RA) all over as well as many autoimmune disorders x

Could you try swimming? I am unable to walk more than about 100m after steroids completely wrecked my body (this is progress, I was bedbound) but swimming I have been able to build up to swimming for 20 minutes now.

I hope you figure out the rest. I know how frustrating it can be. I struggled for 5 years before.i got a diagnosis.(and then the treatment was steroids and I only went and got Cushings).

what about ozempic or something like that? I wouldn't normally recommend doing it, and don't know loads about it, but maybe a chat with your GP could give you more info? Maybe once you lose some weight getting healthier as a whole could be easier.

Thanks - I've wondered about fibromyalgia, I may bring it up with my GP.

Unfortunately swimming is just too painful at the moment.
Ozempic is out for me too.

But thank you 🙂

I don't think I've been bitten by a tick - although it's always possible!

Vit D & others were in the normal range (but low in the range) so might be worth looking at.

Thanks 🙂

I cant help with diagnosis but I can confirm low Vitamin D and B12 can cause horrendous all over pain. When doctors asked if I had muscular or joint pain I used to say I had bone pain but it was inside the bone. Their faces were wtf?!? But high dosing of Vitamin D actually reduced the bone pain.

Get a thick squishy duvet and put it on top of your mattress to help you sleep better. I've done this for years. I am still in pain but I get at least a four hours sleep cycle instead of no sleep.

Thanks @PineappleMom I'm going to take a look at this.

It sounds like Fibromyalgia to me, no cure but there are ways to treat it.

I can't try swimming either because the chlorine makes my skin worse (I have psoriasis and psoriatic arthritis), and the treatment I'm on means I'm immune-suppressed so advised against swimming pools anyway. Local beach is sewage central 😕My social prescriber nurse suggested a local 'closed' session but it's still the same problem with the chemicals. And getting in and out. I mean, most days my fingers don't even work properly.

I wish I had an alternative to suggest. Right now I do very gentle physio exercises, which are stretches really, and go up and down the stairs as many times a day as as I can bear.

I'm also now finally referred to my NHS Trust's 'Persistent Pain Service' (via the GP, MSK and Rheumatology all finally agreeing), with which I have had two sessions - the initial assessment and the compulsory education session. My next appointment (therapy) is finally on the horizon!

I have fibromyalgia too, amongst other autoimmune and gynae issues, I think this is why I replied as your issues sound similar to what I’ve experienced.

Re. the weight loss, I wouldn’t view it as a diet if you go on weight watchers. More as an education for yourself as to what foods are highly calorific that you may not realise. For you to be more mindful and to try and sustain calorie deficit for a number of months. If after 3-6 months there is no change then there is definitely something quite major wrong.

With regard to the exercise, I can bang out 10,000 steps without leaving the house; regular routine of kids to school is about 1500-3000, if I tidy up a room and do some general housework that gets me close to 10,000…. It’s not exercise or breaking a sweat. Just plodding a few hundred steps spaced through the day and working up gradually until the point where you have consistent activity every day and could think about exercising.

If you are in that much pain that is the only way you can do it. Where people with chronic fatigue go wrong is trying to swim or do Pilates with little to no prior activity…. Then they wonder why they are exhausted the next four days and develop the mindset that they can’t exercise… You can’t go from 0 to 100…. Very very gradual.

Stress and lack of sleep will contribute massively to the symptoms you’re having so try and solve those issues as much as possible.

Try well woman max vitamins and actimel probiotic.

Thank you all!

I've ordered the books, going to look at FODMAP, vitamins etc. Will look at ways to increase exercise in the least painful way 🙂

OP, do you have any problems with your skin or your scalp? Or does anyone in your family have psoriasis?

Agree about building up very slowly..I started back doing just 5 minutes of very slow swimming most days, and then each week building up a little bit longer.

the gluten test is unreliable. Try going gluten free for a month.

Gluten causes me to have iron and b12 deficiency, which both cause shocking levels of exhaustion.