[elainepink]

Hi all - i just joined the site as i need some reassurance please. I have been unwell for many years. It all started with chest infections which cleared up after about 2 years. Then the pain in my abdomen started. They removed my gall bladder two years ago - no relief from pain. Last year my thyroid was removed (large lump found) no relief. I am so exhausted all of the time - it is a struggle to work let alone do the activities i used to. My wbc and platelets are low, i have constant pain in my hands fingers knuckles and ankles - even my bones hurt! My ankles swell - lost 10lbs in 3 hours after taking a diuretic. ANA is weak positive and i am going to see rhumy tomorrow. I am so nervous. I have been told it is all in my head and only my gp and gastro believe me. What if the rhumy doesnt believe me too. I feel so sick all of the time and it is so difficult to stay positive. The only relief i have had is from 2 weeks of steroids and they were two weeks of bliss!!!! I am now taking morphine for pain once or twice a week.
Does anyone else feel like this? My GP and Gastro say i have lupus - what if they are wrong!
Any info would be so much appreciated!
Thank you
Elaine

 

[elainepink]

Thank you

Hi Lola
Wow thank you for your quick response! I am in ireland - am going to see a professor molloy - every heard of him? I used to walk 10miles a day, cut the grass do a full days work and then probably go dancing. now i work, home tv and bed - endless cycle. i cut the grass last week and slept for 2 hours. It is upsetting me so much as i so want to go and do things! I am sick to death and financially drained from all of the consultants dismissing me! I wouldnt mind but i am a microbiologist and can actually challenge them - they just dont answer. I am at my wits end - is it common to be told this is all in your head?
Thank you so much for your advice
x e

 

[elainepink]

thank you all

good morning everyone - thank you so much for your support! Thought i was really cracking up to be honest as dont know anyone with this illness. My GP said to take myself off the psychiatric list lol lol lol. It was an out of hours doctor who said i needed psychiatric help - thank god my friend was with me on that occasion...my symptoms get worse just before my period and that particular doctor said that "if i did what i am supposed to i would be cured - at the age of 33 everywoman should have at least 1 baby"........Mmmmh. the other doctor who actually made an appointment for me to see a psychiatrist (which i didnt keep) - was the surgeon who removed my gall bladder. Using a few very careful polite and diplomatic words i conveyed my lack of respect for a surgeon who gives up!
Anyway.....i have just taken out my notebook and am going to write furiously before appointment. Thank you for the advise on the nail polish and the make up. Fortunately i have a few bruises on my arms today so he will see them and as for my legs - thank god it is summer and i dont have to wear socks or i would have bruises there too!
Right must go now and put on my suit of armor and toughen up for today. Thanks also for the biog of the consultant - i am a graduate of UCC food science so hopefully we have something in common.

Oh and to anyone who is reading this and is prehaps thinking of giving up......even my friends called me a hypochondriac..especially as symptoms evolve and new ones appear.........I have spent years fighting and saying that there is something wrong and i am certainly not giving up now! It is very frustrating and scary but you know what you are dead right i know my body and i also know this is not normal!!!

~Unfortunately will be on my own today - there is alot of pressure on my family at the moment as my grandmother is terminally ill and bless her but she requires alot of care. So although they are aware of my situation i am keeping them at arms length as they dont need this......

Have a good day everyone on this lovely bright sunny day....... which i am not sure is good or bad - well a bright day is a mood enhancer so for me it is good.

Thanks again everyone - will keep you posted
xe

 

[elainepink]

you are not serious

Hi Joan
My god that is just scary - i had my gall bladder removed two years ago also. But the unbelievable stomach pain has not subsided. To be honest, i dispair for people who are not strong enough to stand up to these guys!!! I am waiting on the bit of paper with a final diagnosis (no matter what it is) and i have a letter composed to him to include in my medical records at that hospital should i ever be admitted in an emergency (as i will not darken the door otherwise). I am also insisting on a response confirming that this action has been taken. I KNOW i am not in need of psychiatric help - he only saw me for 20 minutes - i live with myself!!! Argh..... mmmh anyway.
Have a good day Joan and happy friday!!!
x e

 

[elainepink]

update

went to my appointment today abd to my surprise, the doctor was very nice and basically said he is 99.9% certain i have lupus. Apparently my immune system is attacking my white blood cells and the connective tissue is also involved and so are my kidneys. ANA and anti DNA are both positive. I had bloods taken and there will be no treatment until he can map out my illness. But he did mention steroids. I was on them for a short time and got relief but am worried about the weight gain having suffered from bullimia in the past my weight is a sensitive issue - do you gain loads of weight???
x e

 

[elainepink]

words of wisdom

Thanks Joan
Sorted out life assurance a few years ago thank god!!!
He did discuss Plaquenil but wants to see my blood work profile first. He also wants low dose steroids for a period of time to establish a baseline and then possibly Plaquenil but he said there is some side effect when one has neutropenia (which i have)???
Have a lovely weekend
x e

 

[elainepink]

recently

Thanks Lily - to be honest i didnt even know my Anti DNA was positive until last week - no one had told me. The frightening thing about all this is that i had researched my symptoms and asked my GP to perform the tests - he said all were negative but referred me back to my gastro man who then referred me to the rheumatologist with an "emergency appointment" when he saw my blood work! So all a wee bit confusing to say the least!!!
Thanks for your advice - re the meds!
x e