Here we go again at the Doctors - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Here we go again at the Doctors

Jeanette_Ish profile image
10 Replies

Just been the Doctors explaining what I was going through, so dam angry to be told its all in my head and stress related in other words maybe I‘m clinically depressed, I was told as the doctor put it in layman’s terms “Rheumatology is a dumping ground for people when they don’t know what’s up with them and although the consultant has not discharged me he will repeat the tests in 6mts time but its more likely that it is all in my mind" OMG I now have to go to see a consultant for my depression because its all in my mind and stress can do weird and wonderful things to the body, its not like I have been like this for 5mins its been years & getting much more intense (mind you its all in my head), what do I do now I could scream. I give up were do i go from here

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Jeanette_Ish profile image
Jeanette_Ish
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10 Replies
zenabb profile image
zenabb

You possibly seemed too irrate when you saw the doctor. Did you see a rheumatologist or was it a GP? You need to calm down and insist on seeing a rheumatologist. Make a list before you go of your symptoms. Revise it if necessary. Remember that our disease is not well known, it is not the GP's fault if he/ she does not know much about it. I know quite well that you must feel awful. Calm down and go on. With my best wishes.

Jeanette_Ish profile image
Jeanette_Ish

thank you for the reply, I did my research before going to see my GP hoping to be refered back to the consultant, I made a list of all the problems i have experianced/encounted, but my first appointment was not long enough so booked a double appointment to which i attended and expained in full my syptoms and the doctor going over my medical history, to which i received the reply its all in the mind I was not angry at the time but upset walked out in total shock, stunned silence, have become angry since but rather than go mental i have requested an appointment got further info from RSA and even been given the details of another consultant in my area so i can request a second oppinion hopefully i will get anwswers and not like she said be dumped on rhumatology when its all in my mind

Naomi1 profile image
Naomi1

Rheumatolgy is not a dumping ground! I got my diagnosis through seeing a rheumatologist and am now on chemotherapy treatment for rheumatoid arthritis (I have Raynaud's secondary to the RA). Get someone to accompany you for support next time you see the consultant and request an ultrasound scan. That's what clinched my diagnosis. Good Luck. Don't let the buggers get the better of you.

Naomi x

LuciaA profile image
LuciaA

Oh poor you! I haven't seen the GP about my Raynaud's, precisely because I expect a reception similar to the one that you have described in your post. The last time I went to see the doctor about a problem that had concerned me (and continues to do so) for a couple of years, she shopped short of telling me that I was making it up! I don't visit the surgery at the slighest manifestation of some minor discomfort. When you spend months or even years (as with my Raynaud's) deliberating whether somethind should be seen by a medic, it is extremely humiliating to be told that, basically "it's all in your head". There is no question about stress playing an important part in so many pathologies, and since this is the case, stress is a disease in itself and should be addressed in its own right.

If you decide to see a psychotherapists (and I am not saying that you should, or that it would be a good) be very careful about who you see. Psychotherapy, counselling and psychoanalysis (also known as psychodynamic psychotherapy) remain unregulated disciplines with borderline practices and dubious practitioners among them. I am not saying that all psychotherapists are quacks, but what I am saying is, do your research and ask a lot of questions.

mews profile image
mews

I am so sorry that you are going through this now. I think that we all have gone through this one time or another, some of us more than others! The one thing that I have learned to do is to take pictures of everything on my cell, that way when I get that..I really don't believe you look, I just whip out my cell phone and there in living color is the proof!! Then they seem to mellow somewhat. I hope this helps some. Stay well.

Mary xo

OXMOAD profile image
OXMOAD

What a grand idea, mews.

My mother suffered from lupus for nearly 20 years with the same responses, Jeanette. "How much do you drink?" "You need a psychiatrist." :But you don't look sick" This was back in the 1970's and '80's. She really suffered. She finally found a doctor who was knowledgeable and treated her well for her last couple years.

Keep being a strong advocate for yourself. Do take someone with you for emotional support if necessary. Don't worry about taking mood elevators. Anyone who has had open heart surgery needs them too. They are a tool for functioning. My dad used to call his medications pet names. He had cancer and heart disease and was disgusted to have to swallow pills. That was one of his way of coping. And it was funny.

Jeanette. You sound as if you have much spunk. Use it to your advantage. Learn from each experience. Journal or record every doctor's visit, who you saw, when and the outcomes. Always get copies of all your lab work and file it in order. Keep a current list of your meds, your allergies, any surgeries or procedures. Get a feather pillow or something to wack if you are mad and watch the feathers fly. That is what I did for my kids. Then they would gather them together and we would sew them back up in the pillow to do all over again Turned that anger into a fun afternoon.

birdlady profile image
birdlady

one thing i do is to google my doctors! i put their name on google and pull up all the info i can on them. at the very least i have an idea of what im heading into when going to apts. and if i see an especially good dr i want to see in my area, i ask for a referral from my gp. a couple of sites, have pt polls. i am seeing my 2nd rheaumy in feb. who has a 5 star rating across the board. and his qualifications are incredible, specializing in scleroderma,raynaulds ect. you can even see where he/she receives training, awards, ect. i was recently diagnosed w scleroderma by my new gp. who knew exactly what she was doing after going to drs who were as dumbfounded as i was. i fired one straight up cause she was looking in all the wrong places. and not listening. you go girl and dont stop till you GET ANSWERS.

Papeena profile image
Papeena

OMG! I have been there done that!!! I feel so bad for you Jeanette. You probably have an Autoimmune Disease like me. I went without a diagnosis for 35 yrs before they finally diagnosed me with Secondary MS. I also have Lupus, Psoriasis, Scleroderma, Optic Neuritis, Blifferitis, RA and so many more. Yet I was told it was all in my head too and that I needed a shrink. It was actually the shrink that suggested that I see an MS Specialist so I did and here I am telling you that IT IS NOT IN YOUR HEAD! Go to aarda.org for more info on Autoimmune Related Diseases and get the "Autoimmune Connection" Book..its like a patients bible, there are many diseases and peoples storys as well as test procedures that the Drs are not even a ware of. You sound like you need this book and if you do get it, and you take it to your Doctors, dont be alarmed if they are insulted by all of the info in this book that they don't know about. Good luck to you my friend, I hope you find your answers. xoxo

Jeanette_Ish profile image
Jeanette_Ish

Sorry for my late reply, and Thank you all for the wonderful replys my last bout which was quite painful I could not move my left side lift up my arms my hands & feet on that side was affecting everything i did frombreathing, sitting down to standing up, when it first happened i thought i was having a heart attack and knew this was not the case so got an emergancy appointment to visit the doctors was an uplifting moment for me, the doctor even gave me a name suspecting i was suffering from conective tissue dissorder basically my immune systems is going haywire so welcome to autoimmune out of control its just nice to know finally i'm not going mental its not in my head and although not sorted medically yet at least i know they are taking me more serious when i say things regarding my health instead of being told I look good and there is no problem maybe now i will get some answers to my problems its a start but still no visit to the consultant oh well be thankful for small parcels thank you to you all each and everyone one of us has a different diagnosis but we all suffer along the road till we are finally belived and yes Papeena the iformation is availible and when you see what you have to whats listed no wonder doctors have hard times diadnosing this

Jeanette_Ish profile image
Jeanette_Ish

Just a little update on doctors, keeping to the same GP where possible which has been a great help although it is difficult to get an appointment with her at least i can pre book her every 4wks just been to see the consultant keeping a diary has helped explain things that i forget as i'm sure its affecting my memory I have been diagnosed with differential connective tissue disorder, what a relief to finally have some idear what is going on with my body.

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