Is it just me who panics in this way about whether I really have RA at all? The widepsread pins and needles upped and left on Monday - the day when my GP phoned later on and said that I was to be switched to injectable MTX.
Ever since I've been feeling like a terrible fraud. It's ages since I had any real pain and swelling - beginning of June to be precise. I only phoned the GP about the widespread pins and needles because I'm on these drugs and after about a week of boring you guys with this strange new symptom I felt I should tell them.
But when the GP phoned me to tell me that rheumy thinks that I still have active RA and should be switched to injectable I did ask him on what basis he thinks my RA is still busy and he said he didn't know but he presumed it would be on clinical signs. But they haven't seen me in person so must simply be going on what I've said alone - and I mentioned my hands have been achy and a little swollen on the knuckles again - but that's all. I asked him if the rheumy had said he thought pins and needles might be inflammation and he said no he didn't know about the pins and needles really. But they were the only reason I phoned him to begin with - because I felt as if I'd been rolled in nettles?!
Sorry to put upon you all but I am now feeling as if everything is all my responsibility and I'm a bit scared. As many of you know I feel fraudulent a lot of the time as really I'm fit and well and not in much pain at all apart from after exercise - and that is normal. So now the prickling has disappeared and the extra stiffness and ache too it feels as if my rheumy and GP think this is what I want - I want to be on these drugs and so they are just giving me what I want?
My raised ESR seems neither here nor there to many people from rheumy to GP to folk on here who all tell me it's in the signs and symptoms. But I don't know how to read these any more? I don't get much visible swelling ever and I keep thinking that things are about to kick off with my joint pain again but then it comes to nothing. I'm not complaining about this of course but should I really be on two powerful DMARDs - let alone injecting one of them - when I'm not even sure I've got this disease any more. I am wondering if it's all in my head now - so hard to know what is just caused by stress and an over active imagination (and I am a bit stressed I admit -got a lot on just now).
I was invited out for a drink last night after my popmobility class and decided to go. Of course I drank only soft drinks while they all had wine and mentioned to the woman who takes the class that this was just because of my drugs (she was buying me a drink and raised her eye when I said "pineapple and soda water please"(this is a very boozy lot!) so I said it casually and just to her.
But this is a small community and everyone knows and I'm very open because it's easier. So we had jolly chats and gossip but I left early to take my MTX. Didn't mention RA to them once of course because it's not relevant. But one of them is OH's boss who told him she'd heard about me having it a while ago. I could feel that they were all going to talk about me as soon as I left. I could just imagine them all saying "well apparantly she's got this rheumatoid thing but you'd never think it to look at her (not like poor-so-and-so who can't even walk and is so ill) - she looks so well and she's so jolly - maybe she's just dreamed it all up". I know this is paranoia but I also know these people after 23 years here. I just feel such a fraud and I'm sure they think I'm one too.
Felt incredibly scared all night and didn't sleep. Am I doing the right thing taking this drug by injection next week? It makes the whole thing seem so much more real and scary and I'm wanting to wimp out of it all and hide. Thank goodness there's somewhere I can offload all this although now you all know I'm really a wimp too!
Tilda, they wouldn't give you the drug if they felt you didn't have ra. They read the blood tests results and that is how they have come to the conclusion you have ra. I know its still early days for you so try not to stress too much about it. Jusr because you look and feel well doesn't mean ther's nothing wrong. If they thought you were a fraud they would have told you and suggested you see a pschc. so don't worry so much. Worry about things that you can do something about,not the ra as your on good hands. Love Sylvi.xx
Hi Tilda,
I can understand how you are feeling, I sometimes feel that I don't need to be on these horrid drugs and then my feet and fingers get very sore and I remember how stiff I am in the mornings and how exhausted I feel by 9 pm.
I know you've mentioned before that you don't have much pain but is that because the meds are working well for you. You have to think what you would be like if you stopped taking them.
You know my husband has Parkinson's and his meds hide how bad he really is, I know if he misses a dose he gets very shaky, so if he stopped his meds altogether he would be dreadful.
I hope that your Rheummy wouldn't want you to take these drugs if they weren't needed, maybe you need to have a chat with your GP again and explain how you feel.
As far as your drinking pals, well no one really understands RA unless they have it or are close to someone who does. It's difficult for you being in such a small community, where everyone knows everyone else, I suppose if they think you are a fraud then there's not a lot you can do about that, just tell them the meds are keeping your disease under control.
Not sure any of what I've written will be of any help but I thought I would try.
You need to do what s best for you and try to forget what other people might think.
Keep strong
Mary x
I take a somewhat different view from the others but of course that might be because I'm such a newbie and because my own diagnosis is still up in the air.
Nothing that has happened to me so far with my disease, or indeed in life, had persuaded me that medical professionals are infallible. While you are on MTX and Hydroxy there is no way of knowing whether the improvement in your condition is down to them or has occurred naturally. And as they are powerful drugs I do think you are right to question what is going on.
However, I don't see any reason for haste as you aren't going on a higher dose of MTX are you? I know it'll get into your system more quickly via injection but its still 15mg, a dose which you know you tolerate (mostly!).
I think you should allow your doubts to stick around without panicking about them. When you see your Rheumy perhaps he will be receptive to the idea of you trying a period without MTX. My brother-in-law's friend is currently doing very well without it after agreeing a break from it with his Rheumy. (Annoying for me as my husband's family have interpreted this simplistically as 'RA is curable'). Speaking of which, there's not much point worrying about what people think, is there?
To be honest, it sounds to me as if you are in quite a nice place with all this at the moment & you deserve to be. Enjoy it, including exploring the possibility that you might be in remission or heading that way. Don't let anything get in your way.
Christina xx
Hi Tilda,
You definitely have the heebie jeebies don't you, when your mind is not racing around and playing tricks on you, you know that both Hospital and GP's would not be putting you on drugs that are powerful if you did not have RA, let alone the cost of it to their budgets! All this because you have no more pins and needles!!
Those pins and needles went because you spoke to the GP and they in turn to the rhumy, now they have decided to inject the MTX, your body has said that's what is required and is relaxing, but your mind is racing at the mere thought of putting a needle into your body. If I were to come and do it for you or anyone else on this site, you would not be afraid, likewise if a medical person were to do it.
Fright, worry, panic is all natural to us all. We are here for you and to listen to your worries, now I know you don't want to stop taking the medication as you will only have full blown RA back again, and you will not be able to go on holiday.
The spooking has started again as to neighbours and friends talking about you behind your back, when leaving the pub. Remember the old saying, 'Whilst you are being talked about they are leaving someone else alone'. I know it's not nice and they have caught you at a low ebb, but you are stronger than them, rise above it and think of the nice things you have to look forward to and knowing that your medication is helping you to fulfil that trip.
Love and hugs to you.xx
Dear Tilda, we all have doubts and fears that we are putting unnecessary drugs into our bodies. However good you are feeling now, just cast your mind back to before you had treatment. Was it you who had to get your son to turn the ignition key in your car and do other things to help you? Also, don't forget that nasty, cold winter is coming - if you are like me you will be dreading the cold as it makes me worse and where you live it is bound to be brass monkey temperature! You have been doing so well and deserve to carry on being relatively pain-free. As to worrying about friends talking badly about you, they may well be saying how much better you have been since starting medication, and how glad they are not to be in your situation!
I'm so sorry that you are feeling worried today. I know I only joined in 18 months ago but I remember when you were in so much pain and how brave you have been to keep going and even the struggle just to get your treatment with the remoteness of your home.
It takes a strong woman to keep the family going and your art and hobbies and I see that strong woman in your blogs and I admire you.
I have heard you say to people "drop the guilt", on some of your blogs , very good advice, and it seems from how your were at your most ill that you have RA and with the treatment you are feeling much better. You deserve to be better after all the work you have done to make yourself better with exercise, diet and drug therapy and not feel panicky or worried.
I felt like a "fraud" applying for my benefits but in my heart I know and you know we are not , and when RA is at its worst its a really horrid illness. You are no fraud, you are just very lucky you and the Doctors seem to be getting the RA a little better controlled.
I cant remember if they said your pins and needles were Raynauds disease, I get them in my hands and legs but its from spinal discs, and they tell me mine is not related to RA.
You seem to worry from what you have said before about admitting the RA to others too , as when you told the choir you were anxious about what they thought and it seems that is how you felt with the popmobility group, I rally think that they love you and if they were talking its probably to say how well you are and how good it is that you keep going. If they are your friends they will be supportive, if they are not then they are not worth worrying about. It took me a while to accept that I have Ra and that it will always be with me and I really hope I can be back to a more "normal" life that you manage at the moment.
Tilda, you are an inspiration to us all, your piece in the NRAS newsletter was wonderful and very balanced and I hope as the day goes on and you get out and about that you will realize this yourself!
Yes that's a truly wonderful response Allanah. I'm really not that inspiring I just have a big gob and a lot of ideas I can't live up to but it's lovely to be appreciated so I'll not diss myself too much thank-you! TTXxx
Hi All. Well what a dump of a blog that was! Basically I got home late (10.30) last night - found OH had gone to work to cover a last minute sicky. So I had more stuff to do than I'd anticipated re washing up, dog, youngest to send to bed etc. Then middle boy was off after a drama rehearsal with his best pal who leaves for uni today (to flat share with my oldest) and didn't come home until about 3am. Today he has to have 2 molars out to make room for a big brace so I'm all jumpy as got to take him to dentist later. So I woke at 3am and never really got back to sleep. Ah yes does that explain why I was in such a twaddle this morning now?!
The thing is I'm just home from tai chi with my closest friend - who is going away to spend six months in Italy so I'm really feeling miserable about that. I usually counsel her re her son having died but today I burbled all the way to tai chi and she was magnificent!
She got to bottom of the injectable MTX because she knows I'm robust about injecting self (I think) but i said that the pharmacist had given me a print out about metjet yesterday and it describes it as a light brown clear solution. That sort of unhinged me somehow? When I take my pills I think to myself - "well they could be vitamins?!" but can't just kid myself with a clear brown liquid I'm injecting into my belly can I? And I've got so much going on just now that's filling me with fear - such as going to Italy and leaving 17 year old beloved son behind doing work experience in Westminster and putting dog in a kennels for 12 days near Edinburgh and seeing friends in Italy whom we haven't seen for many years - it's all just so full on and intense - never mind putting up our artwork first (that's professional and I feel excited and sorted about that if nothing else!
Thanks so much for being supportive - I'm not good at letting on when I'm in a state so you lot see a side of me that most don't. The people who were in the pub weren't my friends at all - they were just people I know. I didn't need to tell then about RA because I'm not in splints or ill but I know they will know as its got out through my OH's work colleagues etc. I don't really care what they say I think I'm just beating self up and projecting onto them if that makes any sense?
And yes Christina I will continue to be a doubting Thomas (as Minka described himself the other day - thanks John!) because that's just the way I am. I don't think I've intentionally made a fuss about my health but like many of you I have a horrible fear of things going on in my body which I could do something to prevent. So I probably do overreact towards pins and needles everywhere (but it was for 3 weeks and they haven't completely gone away) and my brain probably is making a drama out of small aches and pains because of previous flares that - as you've reminded me (thanks Virge!) had me asking the boy to do ignition for me and had me screaming nights into my pillow off and on. This very acidic toothache like pain seems to haunt me a bit leaving echos and making me think it's coming back when it's not?
So I thank you all for reminding me to keep a level head as I tend to remind you to do too! I know I'm one of the lucky ones and I do say this often to myself and to all of you. I haven't got damaged knees to curse and rage about and I can write and stitch and walk and drive and go to pop mobility class so I promise not to winge again for a long time. Tilda xxxx
Thanks Scouser - it really does seem that Ive got something to thank RA for at least - the discovery of you wonderful lot! Tilda xx
What can I say that others haven't? Not a lot, but just to remember that a secret symptom of RA that's not mentioned in any of the medical textbooks is that it strips away a layer of skin so and leaves you hugely vulnerable to all sorts of feelings that you might have shrugged off in the past, or reflected on for 2 minutes and moved on. And it's hard to deal with such a big change as an adult, when you've been used to your own personality for 40+ years. I surprise myself all the time about my lack of resilience to some things, which I would have managed before. And weird things, not RA related, that just leap up and bite me on the bum. So doubts, uncertainty, all encompassing free floating fear, and other worries do seem to be part of the journey we're all on.
Hope you gets bit more rest tonight, and molar extraction goes well. Px
Thanks Polly. Yes I agree with you completely - it was just the loneliest feeling last night being on drugs that have such a big influence on our lives but not being able to communicate about this because it would have been inappropriate. Also the woman who takes it kept asking me if I was okay when doing certain things and that had everyone looking at me. I did tell her because the sitting down one where you lean on your wrists is still a no go for me as my right wrist doesn't bend to 45 degrees or anything like.
And then getting home to a chaotic house and shoving down these tablets last thing that did for me. But I quite often suffer from insomnia on MTX night which is weird because others say they make them feel so tired. I do the next day of course! I wonder if the injectable stuff will free me from the side effects that i've got again today (first time in a while - almost wondered if I'd taken an extra tablet by mistake?!) - a big itchy bite-like spot on my chin and a foul taste in my mouth that has dominated the day. I do hope so! I will be having my first injection mid afternoon and will have the popmobility to go to later if I'm up to it.
Thanks for reminding me that I've been stripped of usual armour plating - I do often forget and just saunter into situations and can't work out why they've floored me? TTx
Oh Tilda you poor sausage. I really do feel for you because I can identify with pretty well all the things you have said. I've been at this RA malarkey a long time and I still find myself getting in a complete tiz because I feel a fraud - then I get this irrational urge to share with people to try to get them to understand, and then I get upset when they don't and wish I had never said anything, and round and round and round it all goes. So you are absolutely not alone in what you are feeling.
Remember that the only reason you are "well enough" to do the things you can now do is BECAUSE of the meds - and the docs certainly wouldn't be prescribing them if you didn't need them. I recently, quite by accident, found a very understanding GP who said something which has stayed with me - he said that his view is that anyone with RA who is not struggling or in pain to some extent is only in that situation because they are taking powerful meds. In other words, he would never look at someone with RA and assume that there is nothing wrong with them because they look relatively ok. I found that very refreshing and I try to remind myself of that when I feel like you are doing at the moment.
As for the mental struggle with the injected mtx - and pretending that the pills are vitamins lol - I used to get my husband to "hide" my mtx pills in chocolate mousse, hoping that I could take them without noticing. The things we do to cope eh?
Thinking of you Tilda - and really good luck with the injected mtx.
Tillyx
Thanks so much Tilly. Coming on here with stuff like this cheers me and enables me to keep my head above water with the rest of the non-RA world somehow. I was feeling at rock bottom last night and this morning but I'm on the ascent again with the help of a bit of an afternoon rest and all of you. It is no good expecting those who don't have RA, even loved ones, to begin to understand the impact it all has on us from drugs to pain to uncertainty. I do worry when I start wishing I could have a flare of RA just to shut myself back up but that's how this thing messes with our heads I suppose.
Today my friend said that I reminded her of an old friend of hers who died a few years ago of cancer. She said that when he was first diagnosed and sent off to Aberdeen for chemo he would come back in a terrible gloom and tell his wife and friends that he just didn't feel anything like sick enough to warrant shoving all these poisons into his body. I remember coming back on the ferry after my dad's funeral and we both had whisky and he told me that having chemo and coming home on a rough sea felt like madness. Gradually the cancer came back as secondary somewhere else and he had to concede that he was actually pretty sick but even days before he died he said he didn't feel nearly sick enough to be receiving palliative care.
What I thought when she told me about him is that, while I could relate to this, I also think we human beings blot out past pain pretty effectively and try and live more in the present with diseases like RA. But the drawback of this is that if the present is good then it becomes almost impossible to think of ourselves as sick enough to warrant the powerful meds. If the present is bad I personally often feel quite relieved because I then have the evidence that justifies the drugs.
But of course RA is not cancer and most people here get plenty of day to day reminders of the disease in the form of chronic pain so on both counts (RA and Cancer) I realise I'm very lucky today really. Tilda xx
Hope you are still feeling brighter than you were.
When I was so well on Infliximab I was convinced that the RA had "done a bunk" and that I was wasting precious NHS resources and I told my husband many a time that I wished I could stop the drug just to "check" that I still needed it. How daft is that eh? Obviously I didn't and since then I have found out full well that the RA hasn't gone away, but I do understand what you mean.
I am struggling quite a bit at the moment - physically and psychologically and finding it hard because it seems even to be a battle to get the medical professionals to understand how things are for me and to get the help I need (I have had a stress fractured shin for at least 4 months and I have had to fight every step of the way to get even an x-ray, let alone any treatment!). All this just adds to the feeling of guilt/being a fraud etc - even when an MRI scan confirmed that I was right all along about the fracture, I still had to battle to get any treatment or proper help - which, in my mind equates to "oh she's just making a fuss, there's nothing wrong". So you see you are really not the only one who feels like this.
My husband is very wise and tells me that feeling guilty just wastes precious energy - and he's absolutely right. But it is still oh so hard.
Anyhoo, thinking of you Tilda and hope you are still managing to keep your head above water.
Tillyx
It's horrible feeling that we are resented for using up valuable NHS resources isn't it? I asked the other GP in our practice if reluctance to let me go on injectable MTX was about money really? She said she very much doubted it but looked up the price differential in her handbook and said oral is £3.50 for a month's supply aprox and each weekly injection costs about £16 so it's a fair difference although nothing on anti tnf of course. She said "RA is a horrible disease and we all want to minimise its effects on you so why would we think that wasn't a price worth paying?" but I'm still not so sure about my own GP and his shrug and obvious disapproval of me going in this direction. He's generally a nice man but he's on the health board and has got to be aware of the finite budget for this independent practice.
Living in a small remote place is quite complex and I do find myself wondering if it's a justifiable expenditure often. Which is bizarre when you consider how many lifestyle choices such as smoking, drinking and overrating impact more on the tax payer? Guilt is a funny thing and as your husband rightly says is a waste of energy and time but on the other hand I guess that those who never feel it have kept us in the mire ecomically - or got us into it in the first place - and I'm thinking of people such as Fred the Shred here?! Maybe the problem is that it's often the wrong people who feel guilty?
Thanks for your thoughts though and sorry its all such an uphill climb for you health wise. Tilda xxx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
