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Newbie, new symptoms

Hello, new here.

Been having many strange symptoms on and off for years but in the last couple of months have intensified with new symptoms.

I’m 48, F and about 20 pounds overweight. I’ve always suffered from fatigue and joint pain which has been loosely diagnosed as fibromyalgia. However, the new symptoms are making me wonder if this is something else.

Specifically I have joint pain mainly in wrists and feet, sore muscles like I’ve done a big workout (I haven’t) especially backs of thighs are always sore. My right leg and arm feel weak and heavy. I’ve seen GP for numbness in legs before, my fingers and arms are twitching like crazy. I have blurred vision like a film over my eyes (been for eye test and prescription is up to date), I’ve seen GP and breast clinic for electric shock type pains through breast a couple of years ago. When I eat carbs, I feel very ill and have palpitations.

Lately I’ve had horrendous shoulder pain and when pressed it feels very tender and sore.

So the main symptoms are the twitching and sore muscles and the weakness.

Does this sound like anything anyone here can relate to? I don’t smoke, I’m teetotal and don’t drink much caffeine other than three or four cups of tea per day.

I’m at a loss where to start really as my GP is not the most helpful.

What you describe in terms of pain doesn’t sound much like MS to me - not my MS anyway. CNS pain really isn’t much like ordinary joint or muscle pain at all, and is not amenable to the same sort of pain relief drugs. Certainly MS can lead to such joint and muscle pain as a result of MS-caused wonky gait, for instance. But that’s an indirect effect, not a primary one.

I’m thinking more along the lines of Lupus than MS. Any way to see a rheumatologist?

Hello Rowchelly

I agree with Alison. Your symptoms sound pretty unbearable and it’s definitely worth having them properly checked out. But it doesn’t sound like MS to me either.

I wouldn’t try and diagnose someone based on a list of symptoms (not that I’m a medical professional in any case!), but there are a whole load of diseases and disorders that share some symptoms.

I suggest you write down a list of your symptoms together with dates, as far back as you can remember. Include how long a symptom lasts, whether it recovers completely or only partially. Take your list (try to keep it relatively brief so you can cover every type of symptom) to your doctor and see what s/ thinks. If there’s a specialist to whomever your GP thinks a referral should be made, they would then have all the information needed to do so.

I realise you’ve said your GP isn’t helpful, perhaps the way to make them help you is to provide them with all the relevant details so they have no choice but to assist.

It may be that you are referred to a rheumatologist, a neurologist, or some other specialist.

Best of luck

Sue

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You say that when you eat carbs you feel very unwell. Just wondering if all carbs, say pototoes or whether it is mainly wheat or grains that have that effect. Have you ever been tested for coeliacs? That can give symptoms similar to what you describe. It causes more systemic symptoms than MS does in its earlier stages and yours sound as if they are more consistent with something acting systemically.

I’ve got an intolerance to nearly all grains - more than just those with gluten. I don’t know whether I have coeliacs because it would involve me eating significant amounts of grains with gluten for a few weeks, (6 weeks they advise) and as they make me feel really unwell I’m not going to do that! I know to avoid them so even if it were confirmed as coeliacs wouldn’t make any difference anyway.

Some people feel very unwell eating grains but don’t have coeliacs - are just ‘merely’ grain intolerant.

Then of course you are in the menopause age and that can cause havoc with some women and throw all sorts of things out of balance.

Keep pushing for answers.

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Thank you all for your replies. I tested negative for coeliac but I’m wondering if it might be pre-diabetes.

I will certainly push to get more investigations but it’s a nightmare trying to get seen.

Thank you all for your advice.

If you think your system is having a hard time keeping your blood glucose stable, you can test it for yourself by cutting out of your diet for a few months sugar and things that turn quickly to sugar like flour, rice and potatoes. If you feel better for it, you’re likely on the right track: if you don’t, there’s no harm done (but you will probably find you have lost a few pounds and got a bit leaner without meaning to.) It’s the way I eat, by the way. Lots of T2D in my family history, and I would prefer to give that one a miss.

Better still, your GP should be willing to do a HbA1c blood test, which will give a good estimate of your blood sugar for the past three months. If you are drifting towards pre-diabetes, that will confirm it, giving you the opportunity to improve your diet before there’s too much harm done. Lots of good info on diabetes.co.uk - they are the low carb experts.

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