I'm sure that, like me, many of us have hospital/consultant/doctors appointments-enough to fill the whole house eighteen million times over, well it seems like it anyway! The main question, that is not always asked is, how do you actually feel? Are there times when, despite 'bad' results you feel fine/great and other times, when results are 'wonderful' and you feel like sh.., no erm, f.., wait a minute...Well not good anyway! Let me guess, Headachy- not helped by the tummy ache/constipation, come to think of it general aches, arms, legs, feet (chest feeling like someone's sitting on it), itchy all over, sweaty/smelly, and all of this is without the fact that you have been sick twice that morning. Am I getting close? Yes thought so! Never the less you still got up,showered, shaved, strained-hoping to 'go'- got dressed and had breakfast. Added a paracetamol tablet, or two, to your morning medication lit a cigarette, if you smoke that is, and got on with the day.
The real question is this do you feel 'dragged down' by all this or, rather like me, happy to still be alive? It is quite a question, I know, and does depend, to a very large extent, on your personal point of view. I know that this getting a bit philosophical, something that I don't 'do' well but It is I think one to be considered. I had a kidney transplant, in July 2013, something I am very, very, very grateful for- it has transformed my life-I no longer have to go for dialysis three times a week- in this respect a little 'gut pain' is not a problem. Sorry to 'ramble on' a bit, A BIT!!!! It's not an easy thing to try to ask/explain, well not to me anyway!
I would be interested in other view, maybe not quite as long/convoluted as mine perhaps?
Thanks for 'listening' AndrewT
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AndrewT
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I have learnt that it is very important to tell the consultants exactly how you are feeling. My bloods were fine last march but I mentioned that I wasn't as generally feeling as good as I had the past few years. So the locum consultant checked my ANCA levels (he said they were told not to do this routinely) but luckily a our hospital they do. Any way they were raised and by September my inflammation markers were up.
I had always said I was ok or not so bad as I think you get used to how you feel and do not want to over react.
But I have learnt my lesson now and will always be honest. After all they are not mind readers and the routine bloods are not the be all and end all.
I went to my GP this week as I just felt ill and sisn't know if it was because I was stressed or something else - I was told that 'sometimes you'll just feel like that with what you've got', he then took my temp and found it was up and said I probably have a virus, 'so many doing the rounds' and sent me on my way.
Felt like a fraud and then 24 hours later coughing up gunk and raging chest infection.
I have alot going on in my personal life and I hold down a part time job as well as having a family to look after. Tired, stressed and down at the moment but I'll carry on and get through whatever life throws at me because I'm not a quitter and I don't care for the alternative.
It would just be nice to be listened to occasionally.
Interesting thoughts! My consultant has occasionally asked if I feel as good as my blood tests. However if I say I am not so good yet my blood tests are still OK there seems to be a reluctance to take any remedial action - they wait until the bloods show a problem, by which time I am considerably worse and a harder hitting treatment is required!
I think this is a particularly UK thing - they are far more likely to intervene early here where I live in northern Italy.
The reluctance to be aggressive in the UK has nearly killed my asthmatic granddaughter a few times - now she's on appropriate drug doses that manage things it is much better, But they still want to reduce it "because of the long term risks". Without the drugs there is not going to be a long term to worry about.
hi Andrew yes i feel all of what you have said bloods come back normal but i still feel aching in hips legs feet,headaches itchy always told the same well i dont hink its the vasculitis as its under control hey ho im no dr but i know my body i just get on with it as best as i can but i always feel tearful after seeing the consultants because i feel they dont believe what im saying
Hi tracey65, like you my bloods are normal but have lots of aches and pains in different parts of my body on different days, at the moment it's particularly in my hands I have no swelling. I told the consultant last week she explained to me it was a combination of muscles wastage and my muscles being a bit floppy due to my illness and the prednisolone. I've been referred for prescription gym to help tone them up, which hopefully will help with the aches and pains get be fitter and help loose some of this extra weight caused by the steroids .
I'm a positive thinker , I remind my self how much better I am than I was 2 years ago when my illness first appeared . When I don't feel well I don't automatically think its a flare of my condition GPA, I monitor my symptoms for a few days then go and see my Gp or ring my specialist nurse for advise. I remind myself there is someone somewhere who is suffering more than me which helps me to be more positive. You have 1 life live it to regret the things you have done not the things you haven't.
However , I always tell my consulstants about all the aches and pains etc , we start at the top of my head and go down to my toes before he starts my examination. ( I thought I had pulled a muscle in my back I left it for about 2 months then went to see my Gp who sent me for an X-ray result nothing showed. Several months later I went to see my consultant, I told him but my now my back pain / side pain had gone he still sent me for a scan which showed I had fractured a couple of my ribs ) lesson learnt not to leave so long in future.
My consultant told me in the beginning You need to be mentally strong to help yourself get better.
i think all the medication sometimes controls how im feeling. Currently my mood is pretty bleak and im finding it hard to motivate myself or look forward to good things that i have planned - but that's not the normal me. i had a flare of CSS over xmas after 3 years of progress and feel tired of fighting it and adjusting. im sure ill get my act together soon - maybe when my steroids come down a bit more.
Andrew, I look forward to your posts as your take on things usually brings a smile to my face. As to the question how am I actually feeling the answer is a complex mix of emotions.
Sad, hurt and angry at my treatment by some NHS Dr's and a feeling of betrayal by an organisation that I have given so many years of loyal service to. Yet a recognition of the wonderful treatment I have had from some.
Proud of my wonderful husband who has put up with so much since I became unwell 3 years ago and has stood resolutely by me.
Happy to have made so many wonderful new friends on my journey and to have been given so much support on this and the VUK Facebook forum ( not forgetting my PMR/ GCA and Lupus buddies as well ).
Amazed that through all this I still feel hope. John has been working away for me and I have a significant Hospital appt next week. If it doesn't work out I know I will get the strength from somewhere to pick myself up and try another avenue. We don't know our own resilience till put to the test.
'How are you feeling?' is the first question my gastro consultant asks when he sees me. He's old enough not to trust the technology overmuch and certainly didn't trust the fancy thermometers in hospital when I was an inpatient, preferring to put his hand on my forehead. All the rheumy consultants at the city hospital were also very good at asking intelligent questions and giving me feedback on all the tests and their thoughts about what I might have. When my friends or folk from the town ask how I'm doing, the answer varies from 'still under control' to those who know the details to 'enjoying the lovely weather' to folk who don't. Everyone here knows I've 'been' ill so it makes things easy. They all say how well I'm looking and I take that as the compliment they intend, even though I know it's down to the Pred. No complaints regarding Scottish NHS apart from my two useless GPs (not just my opinion) who are leaving soon - yippee!
One question for all of you - Have you had a Vit D check?
Vit D deficiency can and does cause quite a few of the symtpoms you have all mentioned, ie aches and pains, feeling down, hot, sweaty, tired et al.
Tracey 65, are you taking enteric coated tablets, if so, wash the dye off before you take them, it can cause itchiness.
Ask your Gp for Double Base gel or buy it OTC and use it as directed, it helps the skin in all sorts of ways. When I was told about it and started to use it - fantastic.
A large proportion of patients with vasculitis are Vit D deficient ( see recent poll results ) , unfortunately replacing the Vit D doesn't " cure " our symptoms. I am not sure if the mechanism for this is known. Certainly I was very deficient in Vit D and replacing it made no difference to my " aches and pains ". I suspect the mechanism is quite complex.
I am on a weekly Vitamin D dose, thanks of my GP. He found a slight, his words not mine, deficiency a few months back. I don't think it is a major issue mind, as my consultants have taken no further action-despite my informing them of my taking this supplement.
You are, I'm quite sure, correct that these 'things' are indeed very complex. But then so is the disease and indeed the human body itself.
I'm just glad to be alive even though, I currently, have a 'stinker' of a cold.
Very best wishes AndrewT
My consultant or nurse specialist usually ask how I've been, but I never know how to answer. Symptoms so many and varied. I have occasionally written them down to show them, only to have some dismissed with the comment: "don't know what's causing that. Go and see your GP". Well, if my consultant doesn't know why I have a particular symptom, why on earth would my GP, who is not au fait with Vasculitis, or even any of my other conditions come to that?
I don't want to be the one to tell you this but.....Vasculitis is a very, very, very, difficult disease to diagnose MANLY because it can appear in so many forms. One of the reasons that I asked this question originally was to, try to, get some understanding/knowledge of quite how 'our people' are feeling. I can therefore, to some extent anyway, understand why/how your consultants/doctors appear to 'pass you around' a bit. I guess that I have perhaps 'got used' to this. One thing to, bear in mind however, is that specialist are just that- 'specialists' in a given area/field. If you/me, indeed any of us, 'present' what, could well be, an entirely different condition then the specialist might feel that (s)he might need a 'General Practitioner's' opinion. Since most G.P.'s are family doctors.....
I hope that this has been some help, if only to re-assure you poemsgalore1 (I still just 'love' this name).
My last hospital appointment was with my gastroenterologist. He asked me how I was feeling and nearly fell off his seat when I said I felt great.
'But you have so many things wrong with you?' Was his reply!
I had to laugh. I started a new treatment regime just over a year ago and haven't felt so good in years. I didn't realise how under the weather is been, despite normal bloods, until I suddenly felt so well again.
It might not last for ever but I'll make hay while the sun shines. And make more doctors fall off their seats.
Now this has made me laugh, a good 'belly laugh', thank you Lupylass- come to think of it so has your 'name'. Yes please, please, please do 'make hey whilst the sun shines'- it may not last long, though I hope it does. Others tell me I make them laugh/happy and now you have 'done' this for me! As the song goes, you know the one, 'clap along if feel that's what you want to do' (I don't much fancy the 'room without a roof' bit mind!).
Pity the poor doctors. Vasculitis is a very variable & unpredictable disease. There are no wholly reliable biomarkers - indicators of disease activity or predictors of relapse. It's one of those situations where years of experience of a disease can be of greater value than the science. There are some patients who claim to be fit on their deathbeds and others who are fighting fit, but have a list of ailments. There are doctors who are very gung-ho with treatments that have lots of side dangerous side-effects and other who are over cautious with a disease that is potentially fatal. There are countries where doctors dispense antibiotics and other powerful medicines like Smarties, because the patients are paying their fees and expect to be given something for their money. It's a complex matter.
But all patients have a responsibility to inform and educate themselves about their illness. The doctor is not a god. The doctor does not know how you are feeling unless you tell him/her in clear understandable language - and in brief. The lab results are easy to read & interpret - even if they are not a reliable indicator.
It needs to be a joint working relationship between doctor & patient. A partnership between patient & professional.
If you want to discuss these points with a forum of top international professionals, come to the Vasculitis
Patient Symposium in London on Saturday April 19th. There will be ample opportunity for discussion!
i had a kidney transplant 9 months ago, i thought i would feel well and even though my blood results look okay, i usually feel sh.. , my body aches usually all over, im get fatigued still. sometimes when im out i have to go home because i just don't feel well, but the doctors then put on letters that i am well and it really pisses me off. i am know seeing a cranial osteopath and i am trying a autoimmune diet, the drug i take for the transplant also effect my stomach giving me bad ibs. so fingers crossed that one day i might feel well xxx oh im also trying mindful meditation recommended by the osteopath
Sorry to hear that you are feeling so bad- you really should be feeling better by now babe! I had a kidney Transplant eighteen moths ago-July 2013-and was definitely getting better by nine months-actually quite a bit before that. Which hospital were you transplanted at mumu? I was at Addenbrooke's Hospital Cambridge, under Dr Torpy (I think that is how he spelt his name). I am now back under Ipswich Hospital, Dr Andi.
You say that your blood results appear 'normal'? Are 'they' checking anything other that Creatinine-in it's self not a bad 'marker' but not the complete story by any means. Other possible tests include;- Protein, Fat (including Cholesterol), Urea/Uric acid, along with Sodium/Potassium-and they are only the ones that I can think of, off the top of my head!
I'm tempted to ask you, without trying to cause you any embarrassment, if you are having pain when peeing, if you are constipated (yes thought so). Do your doctors/consultants even ask you these 'things' mumu-maybe a, very non-specific, 'how are you'. (To which you, no doubt, reply 'can't complain'/'getting better'/'as well as can be expected' etc.) Now I know that it is not in your nature to make a 'fuss' and that you very, very, very grateful for the transplant but......Next time 'they' ask you how you feel say, something like, 'I ache all over, feel sick, can't poo; haven't for over a week-sometimes want to cry, and am just not well!' Well nothing like saying like it is is there?
What medication are you on mumu? It might be possible to change this to another combination. I am on Tacrolimus, as Advagraph, along with MMF, Prednisolone, along with some others to. Know 'side effects' do include, 'muscle pain', stomach problems including, of cause, constipation (and f..k don't we know it!), once again to name but a few.
Anyway please do let me (us) know if you have any 'joy', so to speak.
Practice nurse asked, 'How are you?' the other day when I went in for the usual bloods. I asked if she'd like the social reply or the real one and she said 'both'. So I said, 'Aye, fine, how's yourself?' Then 'struggling'. She said I looked peelie-wallie and, for once, the bloods agree, which is great Only thing is, my consultant's away at the vasculitis conference so I can't get hold of her - what irony!!
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Only thing is, my consultant's away at the vasculitis conference so I can't get hold of her - what irony!! 
Urticarial vasculitis syndrome & hydroxychloroquine
Feeling so much better
Lost sense of smell and taste
A body that feels all 'wrong'
A few developments - anybody got similar
