Is this normal?

[Cakeandslippers]

Hello, I'm 37 and really beginning to struggle with the pain I'm in and I suppose I'm not sure if it's just to be expected. I feel like an old lady.

I've had terrible (sometimes debilitating)tendon pain for years in my wrists and achilles tendons. I've also had milder issues with knees and shoulders. I have awful pins and needles in my arms and hands if I bend my elbows (nerve tests showed nothing) and at night it's also in the top of my arms it wakes me every hour or so. My achilles are so bad I really struggle to get moving when I stand. I get electric shock feelings in my arms and hands a lot too.

More recently I've developed "burning" feelings in parts of my skin. They aren't burnt, the skin is fine but it feels like bad sunburn. I've also had what I think might be sciatica and lower and mid back pain since my second baby was born 2 years ago. And one of my feet is in near constant pain for no apparent reason - feels tendony.

Any advice? GPs are normally lovely, though i haven't seen one in a few years now, but when I've been referred in the past I feel like I'm dismissed because there's no obvious cause.

It's reached a point its getting me down, I can't believe I used to take it for granted how easily I could move around- I've never been one to let this kind of thing get to me. Until about 4 years ago I used to do a lot of sport daily but I'm rapidly running out of things I can manage even on a very leisurely basis.

Is it normal? It's not is it? But what can I do?

No it’s absolutely not normal, you shouldn’t have to live like this. I would go back to the GP and really push hard for the appropriate referrals. Make sure you highlight how much it’s impacting your daily life and routines, that you can’t do the same sport and other activities. Write down notes on your phone beforehand to refer to.

not sure of any more specific advice but hope this bumps thread and more useful people come along in the morning

but you do deserve more

I agree with pp. keep going back to the gp constantly. You need blood tests and relevant referrals to rule things out and hopefully pinpoint a cause. The main thing is that you don’t give up and accept it as being normal because you know what’s normal for you and clearly this isn’t. Good luck!

I think you could do with going so that they can do some bloods +/- extra tests e.g. for neuropathy (I admit I didn't read too closely but if the pain is especially distal neuropathy would be likely to be considered). Be aware that they don't always find a cause for pain and that if they don't then managing the symptoms would be the mainstay of treatment.

Not to scare you but I’d push to have hormone tests. What you are describing is what I experienced (and sometimes still do) during the menopause. I really hope you get to the bottom of it.

Osteopath?

Do you get brain fog at all by any chance?

I’d definitely continue hassling your the gp. But your symptoms sound very similar to what was happening to me. At my worst, my wrists were unbearable, I couldn’t use them, the burning pain was constant and I had to ice them constantly or run them under cold water just to get some relief. I couldn’t sleep at all from the pain. Had the nerve conduction tests, did physio for months, massage, blood tests, but nothing helped or was found.

I found out I had an intolerance to gluten, which after a lot of research came across the term gluten peripheral neuropathy. From my understanding, the gluten proteins get into your brain causing the constant fog and they damage your nervous system. I felt like my tendons were being attacked? I don’t know the science, but it was as if my body had an inflammatory response to gluten and attacked my own tendons. Apparently feet and hands are the first things to be affected. If it carries on unchecked it gets worse and spreads to other body parts.

I don’t know if it shows up in blood tests as I don’t think it’s coeliac. I hassled the doctors so much and no one could help me so I just went completely gluten free myself. It took over a month to start feeling better. It was amazing. I’m now a few years in and I do end up messing up and eating gluten again sometimes and I instantly get brain fog and my hands burn again at night.

It sucks as gluten is in everything. I try and kid myself sometimes that it’s all in my head, but as soon as I eat gluten, knowingly or not, it comes back immediately.

My hands will never be 100 percent as they seem to have long term damage but I can actually use them again and I’m not in constant pain.

It might not be this, so again, definitely keep bothering your gp. I don’t think gps really know about gluten neuropathy and if you don’t have digestion issues they’ll dismiss any gluten intolerance. I hope it gets researched more in future.

Anyway, whenever I read posts like this I have to suggest giving up gluten as I was in pain and suffering for so long and if I can help others then I will!

Write it all down, every symptom, how often, how long, when they started, what triggers symptoms, when they get worse or better, everything you can think of then go and see a GP. A good one should be able to work out what specialist you need to see. It sounds like nerve involvement of some kind, could be B12 anaemia or peripheral neuropathy or something else entirely, what it isn't is normal. If the first GP can't help try another. There's something chronic and long term going on. Chronic conditions tend to worsen without treatment, you need to keep pushing till you find an answer.

Could be as simple as an allergy, and they do worsen with age so something you thought was fine actually isn't. It happen to me with milk, I had always had a lot of milk but now it gives me a feeling of being hung over in addition to muscle and join pains. My mother has an allergy to milk by the way.

The other thing you can try is a multivitamins supplement. It may be something as simple as that. Try it for a week religiously every day and see if you feel any change. It helped me enormously.

Think also of other allergies you now be more sensitive too - like animal allergies or feathers in your bed pillows.

Hormone changes as someone said is another one. Go to your GP and ask for a blood test - including peri menopause hormone test

Good luck!

Thank you so much for the replies. I think a part of has felt for ages that I should just suck it up and it's nice to hear that others wouldn't. I have been referred to MSK, rheumatology and neurology in the past, with the first two they just focused on one symptom (wrists) despite me explaining everything else. The neurologist asked why I'd been referred and what did I think she could do (not in a nice way!) 😔. I think I must have been discharged anyway as they never came back to me and it was a couple of years ago.

All this makes me not really want another referral- though if there was a doctor who'd be willing to look at the whole picture that would be nice. I will definitely go to see my GP again though because writing this all down has made me realise how much worse it has got in the last couple of years and lots of things to think about on here so much appreciated.

Thank you, funny you mention gluten - my husband has said for years that he thinks i have an issue with gluten. I've always ignored him because he really doesn't have much of a rationale other than a feeling... that in itself is odd as he's not into diet or nutrition especially, he is very fit and healthy but doesn't avoid anything at all so it's very random he'd suggest something like that!

I think i do get brain fog at times though its really hard to say as I haven't managed a full night's sleep in 4 years thanks to bet wakeful kids and the pins and needles. I am going to think about how I can trial this as its worth a go. Thank you 😊

No gluten and no milk. Give it a go for ten days and write down how you feel every day. The symptoms are not sudden and it is like boiling a frog so really important you keep a diary. Good luck, you will find the right answer!!

All your symptoms are consistent with Fibromyalgia, I'd go back to GP and ask for another referral to a rheumatologist. I suffered lots of the same symptoms, still do but better controlled now. Osteopath treatments, daily painkillers and amitryptaline (an antidepressant- but used to dull nerve pain and help sleep) keep me going.

I thought it sounded like fibromyalgia too.

OP, how flexible are you? If the answer is quite/very -have a look at the beighton score and Ehler Danlos syndrome.
This has finally answered some very similar symptoms for.me and pulled all the odd bits together into one diagnosis that actually feels like it fits.

OP, how flexible are you? If the answer is quite/very -have a look at the beighton score and Ehler Danlos syndrome.
This has finally answered some very similar symptoms for.me and pulled all the odd bits together into one diagnosis that actually feels like it fits.

Thanks @userxx and @quickbathroombreak several years ago now this was very briefly mentioned as a possibility however I got the impression the doctor thought it was something to keep me quiet.... not sure I'm explaining that well, almost like it was a last resort for people they know have issues but haven't a clue why? A HCP friend I mentioned it to said they didn't really believe in it. It bothered me a bit and tbh I've never even looked it up properly since then because of that. This was over 10 years ago when things weren't as bad, and things have moved on both for me and (hopefully) in healthcare so thanks for this I'm going to look into it and see what I can find out.

The first time I went to see a hospital doctor over these issues (16 years ago!) She told me I was hypermobile. I am not sure it's right though as I'm rubbish at yoga 🤣. I do seem to have a strange mix of very flexible bits and very stiff bits though perhaps I am. I will look up the Beighton score - I haven't come across this before although I'm having distant memories of all sorts of things that doctor asked me to do - sounds like it could have been related to this.

I've got a doctors appointment on 26th. I'm trying to work out how best to play it. She's a nice GP, very young and very willing to listen which is good. I just need to work out what I want her to do. I feel like I've been here so many times before with no useful outcome. I'm also aware that waiting lists here are still over a year in many specialties and I've been to them all before so no idea if they'll even accept a referral.

The thinking on fibromyalgia has changed and improved a lot now. Studies have shown differences in how the brain processes pain. Interestingly many sufferers have other common syndromes including hyper-mobility and IBS amongst others - I was diagnosed as hyper mobile at the same appointment as having fibromyalgia. I too am very inflexible, rubbish at yoga (and all sport) but apparently that can be a common trait as the joints are so overworked and effectively damaged at a very young age. Fibromyalgia is often triggered by a traumatic or stressful event, grief, depression, illness (including something basic like the flu), injury or by birth/pregnancy.

Mine started after a shoulder injury and extremely stressful time in work. I went from my 'normal' of being rubbish at walking/standing for length, back pain, always tired and lots of headaches, to being in extreme pain ( more than the injury should have caused alone ) starting in injured shoulder, but within a few days spreading to include both shoulders, arms and neck. Then next came the nerve pain which could occur anywhere in body, felt like being randomly stabbed, pins & needles, burning pains and sciatica. Then just could not sleep at all (have always needed a lot of sleep) but now that the lack of sleep triggered brain fog, nausea, and dizziness on worst nights. I was off work for months until medication got things under control. Now I have flare ups of symptoms, usually triggered by stress, or 2+ nights of crap sleep or physically over-doing it, but largely ok if I operate within my limits.