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I am so frustrated!!

570 Views 15 Replies 7 Participants Last post by  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
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The fact that steroids helped so much means something inflammatory is going on.
Like you I had a dramatic early response to them. It was like being twenty years younger.
I don't know which country you are in. If it is the UK we can help you out with finding a good Consultant if this one lets you down.
Don't despair.
Good Luck, put your bum on the seat and Do NOT move from the Consulting Room until your questions are answered.
x Lola
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
Hello Elaine,

A big welcome to the site... I am so sorry you are feeling as bad as you are... your story sounds like so many on here...
I am sure you will get a lot out of the site... There is so much information by the people and information on the site itself... Plus the support you will get here is unreal, every one is so kind and understanding and understands what you are going through as all of us have been there or is going through what you are...
You are not crazy and they will not think you are... Make sure you take notes with you of everything you have been going through so you can tell the doctor how you have been feeling...
I was feeling as bad as you for a long time and with medication am feeling quite a bit better at the moment... there are medications out there to help you... with whatever the diagnosis... I too have been on morphine for the last fifteen years. I take it twice a day... so that I can function and it helps alot...
Remember write down everything and any questions you have for the doctor so you dont forget anything... And if you can take someone with you it would help.. I took my sister who is a nurse ,with me... When I first went I was really sick and I dont think I would have remembered everything the doctor said...
Again:welcome: and I hope everything goes well for you... And I hope they come up with what is making you so ill... You take good care of yourself...

Love Penny
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Hi Elaine and :welcome:

although sorry for what brings you here :(

Yours is a very common story unfortunately - let's hope you get some answers soon. We have a few Irish members here and hopefully they will chime in soon.

In the meantime here's a little about your doc (I assume it's the same one, unless he has a son in the same specialty) - he is no spring chicken but lets hope all those years of experience have taught him something :bigsmile: :luck:

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Hi Elaine

Welcome to the Forum from a fellow Irish woman :) There are a few of us Irish people here on the boards.

I can certainly understand your anxieties about seeing the Rheumatologist today. I think many of us have been where you are now. Its hard when you have felt so ill for so long. :hugbetter:

The important thing to remember is that you know your own body and you just have to believe in that and not let others put you off your determination to find out what is wrong. Think of today as a step in the right direction of determining what is going on with your health. Its great that you have a good GP who is supportive and it sounds like he/she will be a strong advocator in your diagnostic journey. Remember that Lupus can be a difficult disease to diagnose as diagnosis is usually determined through a combination of symptoms and blood work.

Dont be surprised if your Rheumtalogist appears to downplay your symptoms today. That would be the experience of a lot of people and it doesnt mean that they dont believe you have something autoimmune going on. It does mean that they are extremely cautious in what they say - particularly at a first appointment.

They will take a clinical history from you today so if you have time before your appointment write down as much as you can remember of your symptoms. Is there anyone in your family who has any autoimmune problems? They should ask questions about family history as well. Have you had any problems reacting in the sun? Its very common for people with Lupus to have problems with the sun (rashes, joint pain, fatigue, etc). Have you checked out the ARC Lupus criteria? Its on a post pinned at the top of the Not Diagnosed Yet Forum. Check this out and see if anything rings any bells.

Make sure they take a urine sample today and have your blood pressure checked. They will probably take more bloods today and give you an appointment to return.

While you are waiting on this process to move forward, ask them about symptom relief. Dont expect a diagnosis today. It would be most unusual at a first appointment.

By the way, who is telling you it is all in your head? Whoever they are just shut your ears off to them (better still tell them to get stuffed). Many of us here have been made to feel like hypochondriacs. Believe in yourself Elaine and dont be put off finding out what is wrong so that you can get the appropriate treatment.

I have to rush as Im heading for work soon but let us know how you get on today. Stay in touch

Take good care
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Welcome to the forum Elaine ! :)

is it common to be told this is all in your head?
Yes it unfortunately is, but the good side is that a doctor who says that is a bad doctor so can be ditched - if you any choice whatsoever. That sort of pyschiatric illness is in fact extremely rare, or so I have read. Ignorant careless doctors are rather common.
If you have little choice then you must have the strength of your convictions and certain knowledge that you are ill and the quality of your life is being seriously affected.
If lupus was a predominately male disease we would hear nothing of " this all in your mind ". Luckily I haven't the energy to look for my soap box :)

My practical tips:
Take a notebook and make brief notes as the consult goes along. This helps pace it too As it is clearly drawing to a close say you'd like to run quickly through them.It is very easy to come out and forget most of what was said!
Find out what happens after the appointment: does specialist write to your GP, do you make follow up appointment now, how can you contact him if need be.

Don't wear nail polish - a good rheumy will look at your hands and nails which can reveal a lot. If you wear make up, take it off before you see him - use bathroom.( Don't forget to take your make up with you to replace it :) )

Don't expect to be diagnosed at once it does sometimes happen that a doctor will say he is pretty sure it is lupus but they always want to wait for test results to confirm. Sometimes further testing is needed.
These days most people lead full lives when the correct medications have been found although most have to make some adaptation to their life styles and habits.
We'll help you every step of the way :)

Best of Luck - I'll keep an eye out for your account

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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 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
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Hi Elaine

Great to hear you have stiffened your spine for the battle! :)

We have one glaring thing in common. The surgeon who removed my gall bladder in Dublin in 2004 (pre diagnosis) told me that I need to talk to someone about my 'symptoms' as there was nothing else he could do or recommend! I wonder was he visiting down your neck of the woods two years ago! :hehe:

Best of luck today!

Luv n stuff
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

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
Hi Elaine

Me here again rushing as usual! Im heading off for the weekend. I just wanted to stop by and say Im sorry about the almost certain diagnosis but at least you can begin treatment and start to get a better quality of life. By the way the anti DNA is usually a clincher for a Lupus diagnosis. I have those antibodies as well.

Steroids are the drug we love to hate. They are a godsend and a lifesaver but they do have side effects. Of course most of the side effects depends on the dosage.

Has he not started you on Plaquenil? Im surprised if thats the case and I hope he is planning to start you soon. Its a disease modifying drug and one which is tolerated really well with the vast majority of people. Its slow acting and it will slow down the progression of the disease over a period of time. Many people will stay on it for years and sometimes the rest of their life. Its a sort of baseline treatment.

Have a good discussion with him about the steroids. Sometimes they are needed for a short period of time to get the disease under control or until other drugs (like Plaquenil) have had a chance to kick in. Ive been on steroids now since November 2005 but at a low dose.

Sorry this isnt longer. Im really in a hurry. I just wanted to stop by.

Oh, by the way, if you havent got things like life assurance etc sorted out do so as soon as you can before you get any official diagnosis. Nothing frightening or anything. Its just that its impossible to get life assurance with a disease like Lupus. Take it from one who knows.....

Catch you soon
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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
Hi there Elaine, and a very warm welcome to this site. Everyone here is here to help and support and share their experiences with everyone else. Don't go too long
with out questioning the lack of Plaquinel, that slows the progressing of the disease.
There is nothing that you can't ask on this site, but the best weapon is knowledge, and knowledge is power, so begin reading all the info at the front of this site before you come into the message boards. Stress=pain, so rest and think of well.
Hi Elaine,

You must feel relieved and a bit shocked at the same time after all this time of everyone questioning whether you were actually ill or not. :hug:

He's probably just being cautious on the Plaquenil and seeing what your latest test results show. It's one of our most benign meds and as halfpint says does actually slow the progression of the disease. It will take a little while to map your particular profile of Lupus, we are all very different, but that is one drug that 99% of Lupies take initially and often forever. No matter what else is added or taken away over the course of time. Pred is often used short term to get inflammation down quickly and some remain on a low dose over a longer period of time. Most docs these days would see how the Plaquenil goes and if its not enough they would then introduce an Immunosuppressant (i.e. so called steroid sparing med) if need be. Negating the need for long term Pred. It's the high doses or long term treatment that can lead to weight gain but don't go getting ahead of yourself that may not end up being part of your med regime anyway in the long term. Most weight gain problems with Pred happen because it can make us crave all the wrong kinds of foods, sweets, lots of carbs etc. The trick is trying to have other healthy snacks laying around so we don't reach for those things.

As Joan said Anti-DsDNA is a clincher for a Lupus diagnosis and I'm surprised no-one else picked that up until now :rolleyes::mad: or did you only just recently show this result?

Good luck and do let us know how you progress from here.

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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
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