Help with Symptoms

[Belle_17]

Hi everyone. I’m not quite sure about my symptoms however, I have always been suffering everyday now. GP thinks I got Raynaud’s because my fingers and toes change colour when it’s cold and gets painful. Couldn’t prescribed me with Clacium chanel blocker because I got low blood pressure. Lately, I’ve been having consistent migraines, reflux, feeling sick all the time. Joint pains and nerve pains. Pins and needles on my feet all the time. Persistent Tinnitus. Giddiness, chest pains and shortness of breath on exertion. I’m thinking it’s down to my anaemia as well but not sure. I am already taking indigestion tablets everyday but seems to not work. I always feel lightheaded, tired all the time, gets incontinent with urine. When I was younger I tend to get red spots on my skin. Itchiness, scaly patch sometimes, hives and when I scratch it, it gets painful and sometimes swollen underneath and bruised easily. Joint pains and nerve pains happen suddenly. I wonder if there are some who experience all of these too. Thanks

[OldTed60]

Hi has your GP run any bloodwork for inflammation, autoimmune diseases etc yet? That’s usually first step if Raynaud’s and other symptoms seem to be appearing. The basic immunology tests are ANA (anti-nuclear antibodies) and RF (rheumatoid factor). If not I’d ask for these 😊

[Belle_17 in reply to OldTed60]

Hi. Thank you for your advice. They did RF before and it was negative. ANA was negative 10 years ago. Symptoms are definitely worst now than before

[FredaN in reply to Belle_17]

My ANA was negative in 2021, but positive June 2023, so it's worth repeating if it's been 10 years. The rheumatologist I saw last year said it doesn't change, but I've seen many times from people on here that it very clearly can and it did with me too!

If your GP can't prescribe Nifedipine (which I think is the only thing licensed for Raynaud's in the UK), then they should ask a rheumatologist for advice or refer you to one. Nifedipine made my gums swell, so the GP asked rheumatology for advice, which resulted in a referral for me.

[positivedaybyday]

Hi,I agree with OldTed, you need to ask your Dr to do blood tests, specifically for auto immune diseases.

The symptoms you describe align to this sphere & you don't want to delay understanding what is causing all these issues.

I have Systemic Sclerosis diagnosed in 2017. I have low blood pressure & when I started to have weird symptoms I was extremely aneamic. With further investigation at the hospital I had a club of blood cells in my stomach which were bleeding internally. Apart from tiredness & being anemic there were no other symptoms in my stomach.

This is why it's so imperative to push at the Drs further.

I also had numbness in my hands which looked red raw, problems with movement eg getting into or out of bed, my mouth not opening as normal e.g eating an apple.

My Raynaulds didn't appear until 3 months later. This normally happens as a secondary issue to Systemic Sclerosis.

The issue with this disease is that its individual & has range of intensity.

Some Drs are still unaware of the auto immune diseases as they can be quite rare.

You definately need to understand what is causing you all these symptoms so please don't delay.

I hope you soon can find out a true reason for your problems & be under a good team to treat & monitor your progress.

Xxc

[Belle_17 in reply to positivedaybyday]

Hi. Thank you very much for your input. I will keep on trying to ask my GP

[Clangerscat in reply to Belle_17]

Perhaps you would be better off asking for a referral to rheumatology, they would be more likely to know which blood tests you might need. My Scleroderma was diagnosed purely by chance when a gastroenterologist who was looking into why I was so anemic noticed my hands and recognised the clawing and tightness of skin as a symptom. She referred me to rheumatology but there are so few that are aware of this condition. Good luck

[cheeselover342]

I had mixed, somewhat confusing, blood test results and a skin biopsy was what finally confirmed my diagnosis of scleroderma - at that time I was under both rheumatology and dermatology but have now been discharged from the latter. Maybe you can push for both? Good luck.