side of hands have a blue tinge

[babyinny]

finally have rhuematology appointment 23rd August

crest syndrome antibodies blue tinge on side of hands since last night have been having pains in fingers and toes past couple of weeks more annoying than anything else also intermittent pains in soles of feet obviously feeling very stressed about this , don't feel cold in fact having hot flushes on and off also pressure on chest but I have had echo at A and E and all seems fine . Any ideas welcome Kathy

[LucyJean]

Hello there, really good news that you have a Rheumatology appointment. I would write down all these questions you have posed on here and take the list into your appointment...and set up camp until you get them answered Seriously though, your Rheumatologist will be able to chat through with you the symptoms you are experiencing, look at any scans or investigations and blood tests that you have had done and be able to give you a clearer idea about what is going on.

They will then be able to look at what treatment is available to control some of the symptoms you are having, such as changes in circulation, joint pain and swelling etc etc

Go prepared to the appointment and you will get more out of it. Sometimes it is helpful to take someone with you, as two heads can be better than one and you will not remember everything that is said. Ask for information leaflets, and take notes (or get the other person to take notes) during the appointment.

There is no point in worrying until you have spoken to someone and formulated a plan of action. I know that that is far easier said than done but if you can try not to churn it over in your head and stress yourself out. That will only exacerbate your pain and lead to poor sleep...and none of us feel good when that happens. Only two weeks to go. Resist the urge to surf the net...it leads to getting drowned in big frightening waves of information!

All my best

Lucy xxx

[babyinny in reply to LucyJean]

Thank Lucy I am naturally a worrier but trying to stay positive Kathy

[Hidden in reply to babyinny]

Hi, I’d say do what you can to reduce your stress; stress is a medically-proven factor that worsens scleroderma (alongside cold).

[babyinny in reply to Hidden]

Thanks bear I have been going through so many tests and stuff for for over a year now all started with lump on my gum. I have putting all the symptoms down to my chronic fatigue /fybro as this is worsened by stress then hit positive blood test for crest. I have been trying CBT courses but can,t say they help a great deal. I do deep breathing excercises and try to stay positive . Hopefully once I see rheumatologist I will be able to cope more. The problem is I have been told by my GP I have crest and we don't have any leaflets just read on NHS web. I have never even heard of this so I obviously I am so worried, she then say it will probably be 3 month wait but fortunately my maxillo facial surgeon has managed to get this brought forward as they wont do any further procedures on my gum until rheumatology have seen me .I have granuloma inflamation on gum and in lymph nodes in neck but await a biopsy on them. So sorry for rant just getting things off my chest this morning this is a great sight for that an so many positive people on here like yourself ,Lucy and of course Zenabb . How long have you had crest/scleroderma and what are your symptoms ? take care Kathy

[Hidden in reply to babyinny]

I completely understand. I had CBT and counselling when I was diagnosed. I’d just say not to worry about things you can’t control and just do what you can control, if that makes sense. It sounds like things are in-hand. The advice on preparing for your appointment is excellent so definitely prepare. I’ve had ssc for around 5 years we think. I have hand/arm pain and fatigue when it’s active and largely fine when it isn’t. I’m very lucky, and I do everything I can do (autoimmune diet; keep active & do sport; take good care of myself eg sleep; vitamin d etc; research) & and accept what I can’t control. I’m actually having a bit of a flare these past 2 days due to work stress (unavoidable really) just have to be patient as it passes for me as quickly as it arrives. Medications will help and you can always call the SRUK helpline to chat to someone who understands too x

[babyinny in reply to Hidden]

Thanks so much for your kind response Bear. A great friend of mine keeps giving me little positivety cards the latest one is keep your positive pants on lol. So got them on today . I am so glad to speak with folk on here as there is so much information on the internet its scary .take care Kathy

[KatieAnna in reply to LucyJean]

Hi I'm sorry to hear how distressing your symptoms are and hope you can stay hopeful and positive. I've learned over 15 years of gradual moving into more symptoms, which seems to cover every part of the body that reacts to my immune system's foibles, that each time after the initial shock of another new symptom, that I come to accept it and move along with it. The drugs and treatments have all helped to the extent that I often forget about having symptoms that are so well controlled that I don't even think about them. I've had surgeries that helped and are now healed, and multiple combinations of different drugs that have gradually improved symptoms.

I try hard not to look back at where I once was because the past only exists in my memory and the present time is actually my life. This is where and who I am and I want to live it to the full within any current constraints. No one has ever had a perfect life, so I'm just normal!!!

Looking into the future is a waste of time as no one really knows what it will look like, good or bad.

Marcus Aurellius said that we only have the next breath. Beyond that we have no idea how things are going to be.

This might be the worst you're going to feel once you have a treatment plan and everything starts to heal you. I'm not trying to minimise the impact of your current pain and distress as I know how overwhelming it can be at times, but just to share my coping mechanisms.

I believe that how we do anything is how we do everything.

Take care of yourself and trust that all will be well and that you're loved by God.

Love KatieAnna

[babyinny in reply to KatieAnna]

Thanks so much for your kind response KatieAnna. A great friend of mine keeps giving me little positivety cards the latest one is keep your positive pants on lol. So got them on today . I am so glad to speak with folk on here as there is so much information on the internet its scary .take care Kathy

[MFC911]

Hi,

I have suffered with this disease for a very long time now and I would like to think I have a good understanding of what is going on.

My advice to you is to get to a Rheumatologist now! Please do not hesitate. I am not going to give you horror stories or scare the living daylights out of you. My experience tells me with those symptoms you are not getting the circulation that you need. You need Sildenafil 150mg daily or at least a GTN patch. Something to dilate you blood vessels ASAP.

Please get on it quickly. Good luck. Regards. Mark.

[babyinny in reply to MFC911]

Thank for your response Mark I have just came back from my GP who has advised no further treatment to be given until see rheumatologist on 23rd. I had a ct scan last week of face neck chest and abdomen that never showed anything worrying and there was no change in this to the previous one I had 3 weeks earlier. take care Kathy

[MFC911 in reply to babyinny]

Hi Kathy,

Few! That is great news. People often adopt the "soldier on" attitude and end up in trouble. Your finger tips and cuticles are very sensitive, you should keep an eye on them and insure there is always a good circulation. I learned the hard way and have the scars to prove it. The problem is this illness is not common and a lot of gp's simply don't know what it's all about.

I hope you get referred to a good Rheumatologist and get on the right medication for you as soon as possible. In the meantime if you get chronic pain then don't hesitate. Go to A&E and don't take no for an answer. I do hope I'm not scaring the daylights out of you. That is absolutely not my intention. You must look after yourself! If you are in pain and the doctor says you are ok then tell them so. Sadly, these days the only way to get anywhere is to stamp feet and don't take no for an answer.

I wish you all the best and hope your health improves quickly.

Good luck with it. Regards. Mark.

[babyinny in reply to MFC911]

Thanks so much again Mark. I have suffered a long time with a chronic condition and as you say we soldier on sometimes with these things . More recently I have had a worsening in my health that I always put down to my chronic fatigue /fybromyalgia as I have so much weird stuff go on and docs do nothing .Anyway I had terrible heaviness in my chest a few weeks ago that scare sh**** out of me I went along to A and E were they did heart echo that was clear , prior to that I had a ct scan prompted by my dental surgeon due to a granuloma inflamation in my gum.Unfortunately or fortunately maybe it was then discovered I have anti centromere antibodies . Over the last few days I noticed blue tinge on hands and blue dots on my fingers palm side so thankfully I see rheumatologist soon , I most certainly will not hesitate taking another trip to A and E if need be and thanks again take care

[babyinny in reply to babyinny]

I did mean to ask Mark is it crest you have and what are your symptoms ?