I know i keep starting threads and asking alot of questions you ll all be fed up with me but this one is for my friend.
I said when i came here i had friends in leeds , near where kathy is living.Joe who i call my brother`s wife is such a wonderful person, she hasnt been well for 7 months now, and weve spoken on the phone sharing notes on docs being mystified at symptoms etc, now it hit me the other day that we were so similar in our illness yet different.
she has had depression ,unshakable depression for months now, docs just keep upping her meds, she has an all over athritic pain and swelling even of face for 6 months, x rays showing no joint damage, she is living with as little spoons as i am.It hit the the other day that it all sounded like lupus and they are both at the end of their tether for a DX, i asked her and she agrees she has cold feet, sweating sometimes, other times shivering with the cold yet heating on full, very like myself but no sicca, i aske dher if this had ever happened before she said after her son was bron and around every 3 years since, i didnt know them then ,whe i mentioned lupus she said my mum has lupus , and when i ran down symptoms she was nodding to them all.Its been great to have that cammaradery, but i am so upset i had to be the one to day the L word .I sent her the sppons theory and she said oh god how good it is to know someone gets it !
I have asked her to mention all this to her doc and get tested and sent to rheumy, is there any advice you could give me to pass on as i know there are many SLE sufferers here , what tests do they do etc?? her GP has been hopeless , i mean all these symptoms and knowing her has lupus in the family, theyve been passing her off as a depressed hypochondriac as they do , and actually this woman is the most lovely down to earth upbeat person you could meet , it seems on remission so she isnt that
any help would be fabulous
T x
McH
Our little forum is all about starting threads and asking questions so please dont ever think we'll get sick of it. You never know a question you might ask one day will assist another person on another day so ask your little heart out its great.
As for your brothers wife. the best thing she can do in the beginning is get a full immunology screen blood test done that may hopefully shed some light on what might be happening. Hopefully there will be something in that to explain what is going on and assist in getting the help she needs.
Tell her our thoughts are with her and we understand the frustration of trying to get the medical system to take us for real and not whinging hypochondriacs
Kudos to you to for being such an advocate
Pud
I hope her doctor, at the very least, checked her for thyroid issues....Sounds a lot like untreated hypothyroidism, which some people get around childbearing time.
Pudmot
thanks i ll be writting it all down for her , and i shall passson the best wishes :)
babs yup i thought of that and its been checked and fine, all the usual bloods are, same a smines are, just if i can give her some info and go armed to the docs it makes difference of night and day, thanks for the advice
T x
Hi :)
I'd certainly get her to ask her doctor to rule Lupus out (which may rule it in) as it runs in her family. I'd always ask for a copy of thyroid blood results too because a lot of GPs think that a TSH of 4 is OK and it is definitely NOT ok for many people. Between 0.5 and 2 is a lot better and 2 is even too high for some.
Take care - Scottie :)
Hi T
I'm sorry to hear about your lovely friend. Just a thought - I saw an immunologist in Leeds when I was having allergy/asthma problems. He's called Philip Woods. I saw him at the BUPA hospital, but I understand he does NHS also. He was the one who found I had anit-nuclear antibodies. He wasn't very forthcoming with any more information for me, but then I didn't know what questions to ask.
As Pud mentioned an immunologist being a good idea, perhaps you could pass that doctors name on?
Kathyx
Thyroid was the first thing that occurred to me as well, and as Scottie says different levels cause different levels of symptoms in different people. The depression can come from that; it can also come from being so sick and not knowing why and having doctors not know why either, yet not acknowledging how seriously your life is affected.
It sounds like you have some good suggestions for how to proceed with your friend. At least she has you as a friend - that is worth its weight in gold.
What is the spoons theory?
Genko
First of all...thanks to you for being such a wonderful and understanding friend! That in and of itself is probably very valuable to her!
I would also encourage her to write down her symptoms as they occur....what meds she has tried...what tests were done and the results, etc. Then she can bring this to her doctor and it may give him/her a better picture of whats going on....combine that with the right labs and hopefully she will be on her way to getting some answers and treatment as needed!
Good luck to her...she is in our thoughts!
thankyou all so much !!
i have told her to write down all symptoms when they first began, how they come and go, what pain she is in and at what times and how it comes and goes, and make a diary which is what im now doing since advice here :)and yes as ive said to her they need to at least rule it out, and get a rheumy refferal let them rule it out GP`s seem to know very little ehre about it all.and ive passsed on the thyroid info :) ty !
She isnt a depressed type at all, i truly feel its the not knowing and feeling like she should do things, i think the lack of any energy at all and pain is whats leading to the depression , fact no one has gotten to the bottom of it all, actually last few days she has been so much brighter just having something to push the docs with, she is too sore and tired to fight, and depressed at that inability to fight, i know being unable to clean the house gets her down alot.i think the doca are mistaking depression for abject fatuge , its tiredness thats the biggest issue and i feel they are mistaking this for lack of volition .
Kathy i shall passs that on and thankyou for the heads up !! its empowering to have knowledge and this will help !
genko the spoons theory i got from a link here , a girl with lupus use an analogy to explain to a friend how illness with lupus affected her day to day and she wrote it and published the story which greatly helped me and my partner understand my energy levles, we know do the same as the girl in the story an dits is now same as with ehr a standing joke between us i aint got enough spoons to do that today, google sppon theory and you ll get it fast :)
thanks all its all cheering her up so much :)
T x
Besides hypothyroid have her ask the doc to do the blood work for the autoimmune thyroid disease which is called Hashimotos. Thyroid is such a funny animal and can be up and down. With the Hashimotos I think it is harder to control the TSH.
Depression goes along with autoimmune diseases and sjogrens and lupus have patients have a lot of this. Hope she finds out fast what is going on. Sounds suspiciously like autoimmune. Irish ;D
Irish
thnakyou for the advice. Its felt good to get us both armed for the docs, i know im getting alot more from appointments these days ,now i have somefacts.
I shall passs all this on , as it comes in :)
It does sound suspiciously like AI , theyve done alot of tests xrays , and the last they mumbled at her they said " some kind of rheumatic thing likely " , i think she is one who would skip denial, she has been ill on and off so much its would just be a relief to know and get help , your advice is making it all easier, and you can hear a new sense of empowerment in her voice, thankyou all so much
T x
Jus to give you all an update
I passed all this onto my friend, she said she felt better armed with some facts to bring to docs attention, she seen the rheumy yesterday, and it went well, all bloods being repeated, chest xray , she is to have an MRI , and Lupus testing , to rule it in or out, she sounds so much brighter and gave the doc a list of all symptoms written down, she is now being taken more seriously , i think just docs changing attidue a bit and saying ok we believe you , we shall do all the tests, had lifted her so much, and its down to what ii learned here from you all that helped me help her, she wont argue with the docs, but now she is learning you have to, she i think is feeling more empowered , sure cheered me up yesterday hearing her so much happier on the phone, funny how upbeat a "depressed " person can sound when someone actually beleives them ,i swear anti depressant therapy would be given out less if dcos would just listen more, thankyou all
T x