Feeling depressed scleroderma

[Selsey]

I have scleroderma raynauds osteoporosis and feel really ill.GPs don't understand how I feel think I am putting it on. Does anyone with illness feel like this

[Nurmohammed]

Hi I mentioned so many times Gp just west off time this is not common disease to they’re treat you just Nhs specialist doctors Even they just waiting to your condition goes serious like I’m suffering from last 15 years I keep going to seen by specialist as I have lots of problems sparely I have kidney damages also hard also kidney also lungs problems which is gate breathless since long time i can’t walk I’m suffering I contact Gp because since more than 3 weeks I’m on bed weary bad to take my breath as I contact Gp they start proses from antibiotics 5 days since have Diarrhea send stool blood I was contact Gp since last 3 weeks for to help me out for my breathless which is gone so bad which I’m using wheelchair Even I want on last time emergency in hospital to check in emergency they keep me on 4 to 5 hours on my wheelchair and you know I’m scleroderma with kidney all others illness which they don’t know my pain so I asked to please can I get bed or anything to I can make my body relax to...! But they just keep telling dr well see you we can’t give any facility on emergency!!! So it’s to hard when people in Madical condition and they gate all kinds of problems just yesterday Gp ring said Heart problem Gp send report to hospital and I hope 🤞 hospital doctors take care of me! Thanks for reading my history sorry if you did not put this comment I could not put this history...! Thanks.

[Hidden]

I go easy on my GP as they’re not trained to cope with rare rheumatological conditions - I only go to them if I need some assistance reaching my rheumatologist- but to be honest, I have his secretary’s email and number. I know it seems natural to go to the GP first and it feels unsettling that they’re not able to help, but once I understood that they were powerless to help, it was easier to find who could. I hope this helps and I’m sorry you’re feeling so bad

[denden in reply to Hidden]

Hi Bear, wow! How did you manage to get Rheumy contact? It would really help us all not to badger them but to know there’s someone who actually knows and cares.

Hi Selsey, all across the different groups you will find that we’ve been there and done that when it comes to GP. What I find amazing is BBC1 can locate these so called specialist GP who speaks so reassuringly knowledgable about our illnesses but where are they based? What’s contact details? Nothing disclosed.

Perhaps you could go the route The _Bear has taken and see if this helps!

Were each member asked to put just 2-line sentences in a journal about GP, the volume would be the biggest most heaviest book ever written 😒

[Hidden in reply to denden]

I think it was on a letter and I just saved it there’s also a Rheymatology nurse’s helpline available from the hospital too - maybe call your hospitals switchboard and ask if they have one?

[denden in reply to Hidden]

Good morning to you. I have no choice but to now. Hate hospitals and have been watching my health deteriorating. Can’t wait until December 😩😢

[Sanmateogirl107]

dam doctors they say its in our heads i have crest syndrome, lupus. go see an immune specialist now. dietician, get another opinion try probiotics and tumerick. ask your doctor to see a psychiatrist counseling helps also try meditation, art therapy, walking, swimming, acupuncture, mindefulness, hobby turn down the dial to pain. ask about support groups and get your family into it let them know what your going through. hope this helps. love julieanna.

[Mylomydog]

Hi yes i certainly feel the same way,feeling depressed, anxious extremely bad bouts of tiredness,difficulty swallowing,hair loss at the sides, swollen muscles,muscle weakness,raynauds,my diagnosis is limited cutatious scleroderma, i also have osteoarthritis.

[Kingfisherblue2009]

Yes depression is terrible I have a right problem with it. Never seem free from it. Plus find it is side affects from certain tablets as well as the illness. Like a double whammy. The GP's do not have a clue what this illness is like. I am lucky at the moment I feel. Reading other peoples problems with this.