First of all I want to say, thank you all so much for your posts and replies - I am usually quite a silent reader but everything I read either makes me feel accepted or educated. Thank you all for being open and honest. This is a wonderful community.
So I thought I would write myself in the hope it may help someone else as it has helped me. I have an appointment next week with my newish doctor (I have been through quite a few, people not believing me or thinking I don’t need any help or investigations). My new doc is wonderful and I can’t praise her enough for her patience. The last time I saw her she asked me to write a 3 month pain diary documentaing most everything I could, which she is going to read. She also asked me for a urine sample and a butt load of blood tests. So here I am now, a week away.
I’m scared. I’m scared she’s going to give up on me. I’m scared the tests come back inconclusive and we need to think of something else. I’m scared that I’m going to be told I have Lupus or Rheumatoid Arthritis, right there in that doctors office. There are so many things going on in my life, it’s as if my brain can’t handle anything anymore and it’s overflowing with emotion.
I suffer a lot from mental health and I’ve seen such a decline in the lead up to this. My anxiety is through the roof. I am willing to fight and wait for answers, no doubt about it. I just want one, does that make sense? But I’m also petrified of it.
I don’t really know the point of this post. Whether it will have meaning. Perhaps some of you could share your diagnosis stories and how you felt and coped when it happened?
Thank you all, I hope you’re having a wonderful evening 💕
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Peppytea
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Thanks so much for your reply! I will have my husband coming with me, and as the weeks have lead up to the appointment I’ve made sure any questions if thought of I’ve written down in my phone to make sure I’m prepared. I’m not usually this organised 😂
Yes, it's a difficult situation. First thought is to think about what usually helps you cope with this kiond of stressful situation? Kevin53 's idea is a really good one - a trusted friend might help you manage those feelings before, during and after the consultation. Or maybe there are other things - some music on your ipod (or whatever you young people use these days)? calming meditation/mindfulness exercises?
Can you be open about your anxieties with your doctor? If she's any good, then if you tell her what you've just written here, she should be able to help you through the process?
I was first diagnosed with heart failure, which was pretty alarming. Since then, I haven't found any way of completely overcoming my anxieties and fears, but I have worked out some things that sometimes help - music, getting close to nature, posting on here and so on.
Whatever the outcome for you, there will always be things you can do to help you through x
Thanks for your reply whisperit! Hope you’re doing well!
Unfortunately my anxiety has been so mistreated and mishandled recently I don’t really have anything that seems to calm me. I think getting my emotions out here to people who understand helps and knowing my husband will be at the appointment with me is a comfort in the sense of support before and after the appointment. But I guess not knowing what you have and being diagnosed is a scary process irregardless.
Yes my doctor is fab and you’re right, I should speak with her about these worries as I haven’t before. Thank you.
I’m sorry to hear your diagnoses 😞 that must have been terrifying to hear that, I would be petrified! But good for you for finding something that helps calm you down and ultimately gives you a quality of life. I love the sea and take as many walks or visits to it as I can. Being ill and a full time carer for my Mum is difficult in this aspect, but it’s the trying that counts.
Thanks so so much for your reply and I hope you have an amazing day!
Good luck with your Drs visit Peppytea & well done on persisting with Drs until you found the right one who will look agyet you and be your champion for whatever disease process you both settle on together.My Rheumo & connective tissue disease throughout my body started over 20 years ago and I had to see Specialists until I found my champion.
I have since added a couple of types of arthritis to this and I am still in the process of finding my champion, it may be a Prof that I have an appointment with in a few weeks, if it’s not I will keep looking. I have a champion G.P. Who is amazing,
Hope you’re having a lovely day! Thanks for the reply.
Yeah, think she is “the one” as it were. She’s great at writing letters when she isn’t happy with a service I have had and it goes off that day too. She’s the type of doc that always follows through on what we agree which is wonderful.
Gosh it sounds like you have so many horrible things, I’m so sorry 😞 it’s what makes us though eh? Still it’s not very nice.
I really hope you find your champion soon - a professor sounds great and knowledgable. Please let me know how you get on lovely 💕
I am so glad you have found the one as it will make life so much easier for you with any medical conditions you have. I have a champion G.P. So am lucky in that sense as she works with me to find the right Specialist.
It’s extra difficult for you being a full time carer for your mother. Your husband sounds very supportive which is great.
I had the same with my poor mother and she passed away a few weeks ago unexpectedly.
My husband passed about 15 years ago.
Even though it was extra difficult looking after Mum at times I miss her greatly and keep going to phone her. My sister took over Mum’s care when it got too difficult for me.
I hope that we hear of others on the site who don’t put up with Drs who don’t understand them & in some cases don’t know their disease & are not interested in finding out.
I’m trying to keep life as stress free as possible (which is not easy).& finding a champion for a couple of other things that will improve my medical situation.
I think we all try and do the best that we can while at the same time trying to improve our medical situations.
hiya. I had an inconclusive lip biopsy for sjogrens. I have fibromyalgia which was first said to be lupus. I have high immflamatory rate of 73 which isn't the case in fibromialgia, apparently inflammation isn't a symptom of fibromialgia. my rheumatologist. send me for a bone body scan nearly 2 weeks ago so waiting to hear from him, also had lots of bloods taken. I am hoping they find something to put my mind at rest due to the not knowing but knowing something else is going on. sounds weird I know. I am just sick of aching, heavy limbs, fatigue and other stuff which comes and goes. having an m.r.i. scan when appointment comes due to my tinnitus having got so much louder and go off balance at times. Also being sent to opthalmomgist in November due to some sort of deterioration in my left eye which is actually my worst side. sorry for going in but I do. Also have terrible brain fog, lack of concentration, depression, anxiety, lots of mental health problems which are getting worse. need a chat anytime, don't hesitate. nice to have people who know what you are going through. I feel I am always moaning but somehow have to try and fight through. sending you a hug. xx
Hey MandPandy1969 please don’t apologise for letting out your thoughts and feelings here - that’s what the forum is there for.
I too hope they find something for you to grab a hold of - it’s horrific knowing that your body isn’t working right but nothing seems to come back with any answer. It’s the boat I’m in now so I completely understand you 💕 but you must try your hardest to be strong and keep working on getting yourself better. It’s so important for the well-being of your mind, soul and life. And it’s not weird wanting to know what it is but also being fearful of it - again, it’s where I am now. I’m desperate to be told what’s going on but scared of the impact on my life.
We can get through this together!
Thanks so much for your reply, and I also give the invitation for you to have a chat with me whenever you like 💖 it’s important to let things out! I hope you have a lovely day sweets 😊
Thank you for your kind message. I know we can't be cured but surely we deserve some sort of life. having a good day so far for a change. doing some cleaning and been out for coffee. not really confident I should be driving but wasn't far. going for a friendly roll up as they call it lol at my bowls club to see how I go again as felt awful last Wednesday after playing a full game in a friendly match. I felt drunk and shouldn't have been driving really. I want to keep playing competitive bowls as played for 28 years. I am going to try playing a county game on Sunday as long as all goes well tonight. I have my doubts if I will be able to competitively as I do get stressed and then fibro kicks in big time for 1 or 2 weeks. I loved my bowls but maybe time to just play friendlies and league even if it's only half a game. xx
mandypandy never apologise for posting your thought & feelings. We are all going through pain and a lot of other stuff too!
One of many things I love about this site is it’s non judgemental & people try & help as much as they can. Even having that support is wonderful. Let us know how your appointment went. I think we have all been to appointments where the Dr does not have a clue about your signs & symptoms. Just to myself I think “oh no not another Functional Dr”!! Then keep going until I can get the expert treatment I need. It can be a long process. I am half way there with some of my problems with names and have been to see quite a few “Functional GP’s & Specialists” as they may not have had the experience with some of your type of problems or that particular group of symptoms does not have a diagnostic name. If that happens don’t let that deter you.
Also re read peppyteas comments about finding the one in terms of Drs so that if some of your symptoms don’t have a name yet find a good Dr if you can that is all about looking after you in every way and treating your ssigns & symptoms & you as the special individual that you are and deserve to make you as comfortable as possible. Also if your inflammation markers are not high enough for fibromyalgia a couple of times & Drs are saying opposite things try not to let them get you down. One Rheumatologist told me their are thousands of Rheumo conditions that don’t have a name for that particular disease yet. With any medical disease they have to have many hundreds of thousands of cases with most of the same symptoms before they can consider that it may be a particular new Rheumo disease that hasn’t got a name yet. It is certainly not new for the sufferers, just for the Specialists & their cohorts to meet some ridiculous medical guidelines.
Sending lots of hugs and strength 💜
(I still haven’t got names for some of my things, I think we have all been there & many of us are still there with some things).
I also am happy to have a private talk with you, Peppytea anyone in this abyss where we don’t have a name for some some of our severe symptoms. I have always worked in the medical area with top Specialists & top University Researchets in disease (many of the good ones do both and are known globally). Even though I know some things may not get a name in my life time I know exactly what you mean & feel like as when I have had a name for one of my auto immune diseases I think thank goodness as I feel validation. You will get validation from a Dr who treats your symptoms if some of your severe problems don’t give them the blood results etc that they were wanting. I keep trying to get my thoughts back on track if I don’t have a name for them yet.
I love your spirit of thinking if your disease is flaring you may still get to play 1/2 a game of your beloved bowls Go Girl!
I felt just as you do now when I was waiting for my appointment in April this year.
I took my long suffering mum with me-she’s been with me through think and thin! I felt it really helped me to have someone as an extra pair of ears as well as support. She’s also great at asking relevant questions when my luopie brain goes blank!!
Because it’s taken so very long to get a diagnosis for me, my worst fear personally was coming out of that office with “inconclusive” and “return to care of GP”, stamped everywhere.
Oddly enough I thought at the time that I had actually come to terms with having a Lupus diagnosis, so when I actually got the diagnosis on the day I felt actually quite good, this may seem a bit bizarre!!
I guess it confirmed that it wasn’t all in my head, it validated everything I had been experiencing for so long (when at times professionals doubted me so much that I began to doubt myself so much - that was awful). It also gave me treatment hope.
I remember saying to my mum in the car on the way to the appointment “Right, if he says it’s ‘nothing’ we aren’t leaving the office until he comes up with a plan to refer me on to someone who can tell me that it’s a ‘something’ and what treatment that ‘something’ responds to.” Thankfully in my case that battle plan didn’t need to be executed!
A few weeks after my diagnosis reality set in and I did start to feel quite low about the diagnosis for a while. I managed this by distracting myself, I love to draw and am learning how to play the electric guitar. I feel these things help me feel like I’m making positive progress with something, as with lupus even with a diagnosis the treatment options can still leave you feeling like you aren’t getting very far in much of a hurry if you get me.
I love my music too. I am also taking advantage of counseling sessions through work, i work for the nhs.
Now I seem to be on the right meds I am feeling better/brighter in myself.
I think getting a diagnosis, no matter what It is is always going to be scary, but if you see the diagnosis as an opportunity rather than an enemy, this helps. At the end of the day wether you know or don’t know a diagnosis doesn’t change the fact that you have it. What a diagnosis does do though is potentially open doors and gateways to increased support, treatment and empathy/understanding from others. Rememer you couldn’t help having it either, it wasn’t your choice or a result of a bad choice.
Re: not getting a diagnosis-I think you need to insist on a follow up plan, whether that be a referral to another specialist or a future review to see if things have changed.
Keep reading...I spent a lot of time reading journal articles (not obsessively, you don’t want to end up with health anxiety). Take your evidence with you when you attend future appointments.
I hope this helps a little. No matter what anyone says to you in here you are going to be anxious about the outcome and that’s totally natural. I’d say that many (if not all) of us on here can truly empathize with you more than you know.
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