Invisible diesease

[leighlfc]

I’m 46 got 3 children living with partner woke up one morning thinking I had a splinter in my index finger after several visits to walk in centres aswell as a&e and five nights of excruciating pain I was told I had a blood clot trapped in my finger by this time I had gangrene the pain was unbearable I was put on iloprost infusion for 8 days since then have been diagnosed with uctd and servere secondary Raynaud s also ana positive I’m on 3viagra a day but have lost two stone in weight my finger is now ichemic but I just get told to wear gloves as if it’s invisabl e just thought I’d have a moan to someone who understands x

[overnighthearingloss]

I don't know what area of the country you live in but sounds like some of the 'professionals' you were seen by need a rocket up their behind. Good time of year for it.

Hopefully now you have been diagnosed they will be taking greater care.

There are many with lupus that have secondary Raynaud's but there is also a specific forum on health unlocked. Scleroderma and Raynaud's UK.

That all looks extremely painful. Betting you are right handed as well. I hope your partner is assisting you with regular daily tasks.

What happened re the gangrene?

[leighlfc in reply to overnighthearingloss]

R thanks for the interest I live in Liverpool the gangrene killed the tip of my finger and I can’t use it on touch phones as it’s dead I’ve had a crap few years as I seem like I’m always moaning I’m scared to stretch cause I get cramp if I yawn I get lock jaw I’ve been in in a&e twice this sit with pneumonia (double) but because it was consolidated it didn’t get recognised finally after not being able to breathe they gave me a chest X-ray also same week got celliyis (blood poisoning) of a bite my rheumatologist is brilliant and well recognised as a specalist consultant unfortunately as only seen me twice therefore keep having to chase things up sorry to go on but I’m up most nights with restless legs ☹️

[overnighthearingloss in reply to leighlfc]

Bearing in mind that you live up north you may be suffering from low vitamin d levels. This is protective against colds flu and pneumonia. If you have low levels it would be a good idea to get them raised.

Magnesium is often lacking when you are getting loads of cramps.

I wonder if I may have had similar effects to you in the top of some of my fingers dying. I have to be selective in using touch screens and feel sure I would be a useless candidate for fingerprint identification due to all the past scarring.

I can't offer suggestions re restless legs but am sure another on the forum will be able to

[leighlfc in reply to overnighthearingloss]

Yeh I’m on vitamin d lifelong had nail fold scope done discribed with definite loops??? Had heart scan mri & ct and vascular ultrasound got diagnosed with undifferentiated connective tissue disease with secondary Raynaud s ana positive aswell as sjgeons syndrome (can’t spell it )oh an I’m on asprin life long but hey ho!! Could be worse oh and I’ve lost two stone and had the camera which revealed helibacteriaplyori or something similar thankyou for listening x

[Hidden in reply to leighlfc]

Hi there and welcome but sorry you have had to find us. I have Sjögren’s and overlap CTD. Never had such an extreme onset of Raynaud’s as yours but it did come on suddenly about 7 years ago when I was newly diagnosed with RA age 48. Now RA has been changed to Sjögren’s but due to normal nailfold test 3 years ago they won’t take my systemic symptoms seriously in my rheumatology/CTD team. Anyway my main disease is Sjögren’s with secondary Raynaud’s and it’s horrible rare twin, Erythromelagia. These overlap a neurological problem for me called small fibre neuropathy. I do get little explosions of burst blood vessels but nothing like yours. I have a lot of trouble with touch screen typing now due to painful neuropathy. Yours is very dramatic and visible.

I guess rheumatologists see all sorts though and their main focus is to prevent it happening to any more of your fingers or other parts now. X

[Oshgosh]

That’s awful,you dont seem to be getting enough care..

Is your GP helpful?

As mentioned previously,there may be relevant advice on this forum.

Perhaps you could repost this in a couple of days,if people are busy,they don’t always catch posts the first time round,then the post slips down the list and isn’t really visible.

I hope you can get some help

[MissusTee]

Something like this happened to me, but I had a gangrenous ulcer. Really painful.