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Having sero-negative rheumatoid arthritis delayed a definite diagnosis for 9 years.
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I had this ongoing scenario with no diagnosis and after 6 months I started to get pain in my bones. I also had muscle fatigue and my GP sent me to the local general hospital and they couldn't work out what it was. I was under the care of the local rheumatologist and this is going back to the late 70s.
And the, I went back and I was under the care of this rheumatologist for a period of about 9 years, up until his retirement in '85, '86. And the level of treatment, though I still hadn't had a definite diagnosis all this time from the late 70s because I wasn't falling into any of the general patterns. It was only when the actual joint deterioration and there was actual evidence on the slides that it became apparent what way we were going and I was not able to go back to do the sports although I tried on a few occasions.
But going back, I mean, from the point of arthritis and that I started to learn everything there was about it and I realised that even under rheumatoid arthritis there was certain, no, nobody was going to be the same, everybody's different. And I sort of fell under the, what is regarded as sero-negative because I didn't have the, the proteins in the blood that would show up to give a clear diagnostic process. |
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Family and friends did not understand the full effects of RA.
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My family are still in denial. They, because their concept of it is it's something that affects old people. You know, to have someone that was playing a lot of sports at county and international level, to not be able to do any of this at such a young, they don't' understand that. And I can remember once I was quite bad and having trouble lifting my arms up, I let a kitchen door swing and I got told off for slamming doors, I remember screaming, “You don't understand. You don't know what it's like.” And, again it's not a physical illness, it's not visible. And there was all this mismatch of understanding with family and they only took it seriously when I was having to up, up and down the stairs backwards and pull myself up.
But then, again, you know, it was something like, “Oh it's only a quick, it's a short-term thing. It will be gone in a week, it will be gone in a month.” And of course as the weeks and months got longer and longer it you know, it's crazy.
But also friends. I had to spend a long time counselling friends to understand. And I think one of the big things that people don't understand it's part of the condition, it affects moods. You know, one day you'll feel bright as a button and the next minute, week or day you just won't. It's like you almost grunt at people, they say, “What's the matter with you?” And I'll say, “Nothing, I'm fine but I just don't feel like talking today.” |
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Some people with preconceived ideas about RA felt sorry for her, which she didn't want.
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And it, it's an education programme with telling people. I can remember when after seeing the consultant that I'm now under for the first and second time, and going back and telling my employer at the time that, “Oh yeah, it's rheumatoid arthritis but I knew that anyway” and I was so blasé about it and everyone else was in shock.
It was really quite strange, it was quite weird because they had this preconceived idea that my life was over, my career was finished and I remember, I had spend an awful lot of time going back and educating them, even colleagues in the office were coming up, “Why aren't you worried? I'd be crying my eyes out”.
There was one or two others in the hospital that were sort of a bit, a bit of Jonah's, you know, sort of like the magic diagnosis, like, “Oh, oh I really feel sorry for you, Oh you poor thing.” And you don't need that. You know, you're trying to come to terms with something that's fairly emotive and you get the poor, oh the poor you, scenario. In fact I even, it, it got to that stage once I'd got home from the hospital I'd been working where I'd been working, I'd been there a fairly long time and because everyone was sort of making their own conclusions what it was, although I wasn't saying what it was, yet I had this, “You poor thing,”
There were several trying to fall over themselves and wrap me in cotton wool. I ended up leaving the organisation. I just couldn't handle it. I didn't want to be wrapped in cotton wool. I wanted to be, I was still, still the same person that I was beforehand so it's, I feel more inclined to be comfortable talking to people with rheumatoid arthritis than talking to people who have a preconceived conception of what the condition is, you know. |
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The treatment options were all explained. She was given information and an opportunity to talk to other people about methotrexate.
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Have you felt that in the past you've had a choice in what you've been prescribed?
Very much so. With the exception of my first experience at my local hospital when I lived in another part of the country. But since then I have always felt that my, my concerns regarding treatment were taken fully into consideration and there were options. It wasn't, “Well take this,” you know. The choice wasn't you can take it or not take it. The choice was, “Well if you're, why aren't you comfortable, can we talk about it? I think it's the best treatment but if you really don't want to take there is X, Y and Z.” So there were always been options for me. And I think that's quite comforting.
And, and you've felt you were given enough information to make a decision on?
Yes. Yes. Like, going back to the methotrexate, I was given a month cooling off before it was even agreed. There was absolutely no pressure for me to go onto second line drugs without me having had a chance to see all the information and talk to other people. I'm probably luckier than most people because of the work I do I've got people that I know are taking these drugs and I know there's a big pool of support.
The same with surgery, if I did go down that route, I've got people that I can talk to that have had the surgery that's been suggested so, yeah, there are, you know, there are options. |
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She used to take anti-inflammatories especially before exercising but after a time found she didn't need them.
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And you, so you're not taking anti-inflammatories?
No. No. A lot of people find that strange but to be honest they, they don't really make an awful lot of difference. If I'm not flaring then I don't need them. I used to, I used to take over the counter stuff. This is a long time before I was on methotrexate, I used to take oh I've forgotten the name of it, brufen, I couldn't think of it. And that was good because with me it's not just the joints, it's the muscles as well and it just has a good muscle relaxant. So, believe it or not, I used to take two of those an hour before I used to go to the gym, so I'd loosen up my muscles and just build up my muscles without putting any strain, and that actually worked very well.
But it got to the stage where I wasn't any different whether I was taking them or not taking them. So I thought, “Why take something if you can have the same effect now that you're body's got into the idea that to exercise is, is good?” I don't get any pain if I do a workout. I don't ever feel, even if I've been flaring I don't ever feel any tight muscles afterwards. So, you know, I know what I can do and what I can't do and if I'm, I am flaring I just cut out whatever whichever joints are affected the worst and just work, work out around, around that. |
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Better education is needed about the side effects of methotrexate and the reason for blood monitoring.
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But interestingly enough I'm actually working with the NPSA on a project, National Patient Safety Agency, on a project on methotrexate, at the moment. We're looking at making it or, more information for people that make it a safer drug because I understand there was a lot confusion about the drug. I know people have taken it daily instead of weekly. I know all sorts of things and there's no mon, there's no actual structured monitoring in this country on methotrexate.
Some patients aren't told. They just know they've got to have blood tests but they don't know why. And I mean that's all very well and good but if you're having a drug that, once a week which that could potentially have serious side effects you need to take control of that, you need to think, “Well I don't feel well, I'm not going to wait a month to have my bloods done. I think I ought to not take the drug today, go and have the bloods done, see what's happening and take it forward.” And that will cut down a lot of the problems.
I mean, I personally think methotrexate is probably one of the most safe drugs for rheumatoid arthritis but it can be made safer by education and consistency across the UK. And I think that is so important. If everybody knows what the side effects are, if everybody knows what to look for then there won't be any problems with it. But it's all this mismatch of information. And it's not just at, from a rheumatology perspective, it's if you get rushed to casualty, or you know, “Are you taking any medications?” They, they just don't know the implications and the, the interactions of things that you will get at a different point of treatment. And I think this, this is where the education falls down.
There are a lot of drugs I know that will raise the levels of methotrexate, which will raise the toxicit, toxic risks. But if that's not goal posted or highlighted to you, I mean you as a patient could say, “All right, well while I'm taking this with methotrexate, I'd better have my bloods done every, every fortnight just to be on the safe side.” But if it's not pointed out, you know, a month is too late in some cases. |
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Describes having an MRI scan and how she dealt with her claustrophobia.
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I got a cancellation very quickly. And I had to phone to go through a medical questionnaire on the phone to validate the appointment that A) I could make the time allotted and all the rest. And I remember laughing and joking saying, “Well I don't know what to expect”. And they said, “Well let's go through this questionnaire and then we'll talk about it”. I said, “Well can I eat? Can I drive? you know and this sort of thing?” She said, “Oh yeah, yeah, yeah, you're arms won't fall off or drop off”.
And I went off to have my scans and I got there at five minutes before my appointment so I then filled out a medical questionnaire confirming what went through signed the disclaimer and all the rest and I was escorted, I went to sit down and I was dragged straight in and it's really funny because they had this most gorgeous mural on the wall which was a very relaxing ocean sort of scenic view, which I totally missed and looked straight at this machine and I went, ”I'm not getting in that”, [laughing] which was my first reaction, which was a bit scary. And she said, “What's the problem with it”? And I said, “I'm claustrophobic” and she said, I said, “I drive with the windows open” and she said, “Really?” and I went, “Really, I'm claustrophobic.” So anyway, she said, “Well just try it.”
And I got into the machine and I was given a radio mike so I had constant, we were in constant contact, and the only thing that I wasn't aware of because of having the shoulders done I had to be right in the centre of the machine and I was really quite scared. I was also, because of the magnetic thing, I'm thinking, 'Oh my God, will all my fillings come out', and things like this. So it was the first question I asked and she said, “No, no, trust me. It's on your, we're turning that bit off. It's on your shoulders”, you know and I've I'd already said I've got no pins or plates in me or whatever, so, that was fine. But I wasn't geared for the noise and I just, she said, “Just find someway to relax”, and this is the middle of August I went.
So I started off doing a Christmas shopping list to get myself through it because I was really, really feeling quite claustrophobic and I was like forcing myself to relax. And I can remember feeling I was getting a bit panicky, I was almost having an anxiety attack at one point and I'm thinking, “No, no go on to thinking of everyone's name beginning with A”, and then I went on to B and all the rest of it. Anyway I'd been in this machine for about 45, 50 minutes and I didn't even realise. All I was focusing on was trying to relax, trying not to think about the fact that I could see the, the thing and you know I couldn't try and sit up.
I then got dressed and I wasn't allowed to leave until they'd made me tea and had tea and biscuits. And “Are you all right? Are you comfortable to drive home, you're not…” and they you know, they really are, before, during and afterwards was really, really good. And I was well impressed. Not 100% sure I'd want to do it, knees, ankles, yeah I'll think about going back in there, hmm, I'm not sure because now that I've done that it was quite uncomfortable. |
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Has set up hydrotherapy sessions for people with disabilities which have also become a support group.
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It's, it's, it's attached to an NH, NHS hospital. It is actually attached to a rehabilitation centre which is specific for strokes and that type of ilk. But we, we use it as they rent out the pool to groups. The criteria's quite stringent, it's quite simplistic really: one, you always have to, whatever group you've got to have a, a qualified physio present.
And, and that's what we do. We, we've actually got, I've got three groups now set up probably soon to be on my fourth group now because demand from the local hospitals as in people being referred to me. It used to be specific for arthritis but we've found there are so many other overlapping conditions. I mean, the Thursday group now has got, it's got about 4, 4 or 5 RA's.
It's got, it's got 2 MS, it's got one Parkinson's and it's got one that's getting over a, a bad sporting injury so, you know, and it's interesting because they've actually, everybody has learnt something about managing the other ones, like there are so many overlapping things with MS that there are with RA. I mean you know two very different conditions but you still get the fatigue, you still get the you know one day you can do anything and another day you can't do anything and you know you just get on with it really [laughs].
I actually attend, I don't attend all three groups, I attend two of them. The benefits to me is I'm like anyone else I'm just a paid person going, the benefit is that I get to see my physio ex on a more regular basis. But also it's swapping ideas with other people with similar conditions.
It's that bonding, it's that being able to relax and to be honest if you've got a long term chronic condition and you can take your clothes off in front of other people with similar conditions, where we all know that our joints aren't quite as shapely as someone else, to have that confidence, it builds up confidence for you to say, “Well nobody in that environment is gonna look [pulls face] ugh like that”, therefore you feel more confident to go to the beach or somewhere else or go to a swimming pool where you might have thought, 'Oh I can't take, I'm swollen up, my, my abdomen's swelling because I'm on steroids” or you know I've got this rash 'cos of the steroids or whatever.
But it it's just it's, it's comforting then. You also know that you're doing exercise that's geared specific for people with musculoskeletal conditions, in an environment that's warm and safe and also with expert tuition and support. |
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The rheumatology nurse has given her steroid injections; she has also used the helpline.
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Yeah. And, so do you see the specialist nurse on a regular basis or…?
Yes, I, I tend to see her every 3 months so realistically if I'm seeing my consultant every 6 months, I'll see her in between. So I'm, you know, I, I either see one or t'other. Although the way my appointments are at the moment I've got a consultancy appointment and one to see her within a week of each other which I know I'm not going to keep both of those, I will speak to her to, to, to move it into a sensible time frame.
But I have access to a help-line all the time. I've, I mean I was at the hospital for something else and I was due a depo injection and I just happened to mention it to the clinical nurse practitioner and I was told, “No you don't need a GP appointment, you don't need to go and see them. I'm in clinic the same day as you're up, just come in.” And I was fitted in between and no frills or flowers, or we didn't I think we spent, said about 6 words to each other and I had the injection without my notes being available but I didn't have to wait around while they got my notes.
So when I saw my consultant, he was aware that I'd been there 3 weeks before and it was all in my records, were all up to date and everything was sorted on that. You know, so that was quite nice to have that rapport there. It's like an extra safety net almost.
The breathing crept up and I actually was ringing the help-line for something totally unrelated and I'd just walked up three flights of stairs into my flat and when I actually got, got into the flat my phone was ringing and it was the clinical nurse practitioner and she said, “You're wheezing really badly.” I said, “Oh yeah, I wanted to talk to you about that.” She said, “When did that come on?” I said, “Well yesterday, it was after I'd taken my methotrexate.” She went, “Right, that's it, don't take any more.” But I had, that ca, phone call was Friday afternoon two o'clock. She rung me back at 3 o'clock confirming a 9 o'clock Monday morning appointment. I saw my consultant, I had chest x-rays on Monday. |
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She used disassociation to help control the pain.
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And then its rest and relaxation, deep breathing I actually use disassociation quite effectively and that is where I meditate and I actually visualise, for argument's sake if it's my right shoulder that's really burning, I actually visualise that that shoulder being separate to my body which then, it does actually in truth means you cannot use your right arm.
However it is very effective because then that, because it's not connected to you, you can't feel the pain and that's a very I use that with rest. So rest and disassociation, so if you're lying quietly on the couch or on the bed and you're in absolute agony you just really concentrate on all parts of your body, focus on, on the pain and then focus on it being removed from you. It took a long time to learn that skill. I have to say, it's not something that you can just think, “Well that's easy, anyone can do it.” It does take time, but it's so effective.
And that disassociation, does that just last as long as you sort of lying down and...?
You've, you can't, well you can walk away, around with, if it's sort of an arm or a shoulder, you can't walk around if it's a knee or a hip or an ankle, you, you would literally fall flat on your face if you tried to get up because [Hmm] it's weird, because of the way the mind works it, it, it's saying, “That, that is not there.” Hmm. It's to do with mind mapping, I mean, we, we use less than 1% of our brains it's all this business.
If you like it's the same as, you hit your foot, a message goes from your brain down to your foot to say it hurts or you've got to watch it. Well it's doing that in reverse. You've already got the hurt there so all you're doing is blocking that channel from the brain saying that that hurts. Or removing it, or disassociating it from you. So, and that's quite effective and it gives, gives a lot of respite when you're in pain. |
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She suggests it is important to talk about sex, to be 'creative', to use humour and to have an open and honest approach.
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Yeah, well I can just say it hasn't really because at the end of the day, it's about talking and it's about, it's not just about my needs, it's about my partner's needs and finding middle ground and talking about it. So, no from, the only thing which like I say, is a bit of a joke sex and arthritis, you know, if your muscles are tight or whatever, you might not feel like walking afterwards but it it's a standing joke, that is about it really, you know.
But I would actually say one thing is while people do feel that they can't talk about it and if you, you're the person with arthritis, you feel that your partner doesn't find you attractive any more because they're backing off and all the rest and the person that doesn't have it thinks, “Well, if I touch her, she's in pain”, and all the rest. So that's why I think it's very important to talk about it. But I think if you, if you can use humour and you can be open and honest, then you just if anything it makes you more creative for the want of a better way of putting it really.
And I, I you know there's over nine million people with arthritis in this country and I always say this when I get asked this, I don't believe that there all celibate for one minute. It shouldn't breakdown relationships. Some people hide behind it and say my relationship broke down because of … but I don't believe that. I think it can spoil a good relationship if you let it but it takes two to make that work. |
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She believed she faced discrimination when applying for jobs.
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Have you ever, you know, felt discriminated against because of your rheumatoid arthritis?
Yeah. When applying for jobs. You know, people have a preconceived perception that someone that sort of would put rheumatoid arthritis on an application must be severely disabled or severely handicapped. I mean, I've put on applications “Have had rheumatoid arthritis X number of years. Time off in last year from work zero days.” And have not had a response.
We actually, we, I was a bit cheeky, I actually did this quite a long time ago, was testing the water out and we randomly sent out CVs changing the addresses and that and putting my, my skills through on an application and putting a friend's skills through that didn't have as many qualifications, or didn't match to the criteria as closely as I did but had no physical problems, had two weeks off their previous job with a chest infection. I'd put down rheumatoid arthritis, had no previous time off. They get offered an interview, I didn't. And it was just, you know, it was something that I wanted to prove for myself that despite what people are saying there is still a lot of discrimination. |
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She feels better without processed food. When she has a 'flare' she fasts for 48 hours to give her system a chance to 'calm down'.
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And I'd, I'd read somewhere that steroids, you know, you have to watch what, what you're doing and, and I just cut everything out. And I went on to an even keel when, I don't notice any surges now. So I, I, and I think since I've cut out processed food I've had a lot less flares and I haven't had fatigue as much because there's noth, you know there's no giant leaps of one thing or another. So the fatigue is a bit easier to control, that in not having energy surges and then dips. 'Cos it, it's the dip that sends you into the flare not the surge.
But I do think the Stone Age diet was a lot healthier than our processed throwaway.
Oh, I'm hopeless on that.
Well I have my moments but the, the more natural I am, it's like today, I haven't eaten today because I was flaring and I'll automatically fast for 48 hours if I'm flaring.
Gosh.
Yeah, and when I say fast, I'll drink juices and vegetable juices and things like that but I won't eat solids. I'll just give my whole system a chance to calm down. And that actually stops it going from feeling like all niggly to next level up. And as I've got plenty of padding on me, I mean, I can afford to do it. |
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She liked the support group because there she could be a 'real' person and 'let her guard down'.
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But it is important to be able to relax and that's why I believe in self-help and support groups because if you can actually positively talk to people where you don't have to put on this big act that you're always being strong and you're, you know, “Oh I'm jolly hockey sticks type and nothing phases you.” But when you can actually be a real person and you can let your guards down but it's very difficult. You know, I, I find it strange that for something that's so common it's so misunderstood. You know, there's all the information on web sites and things about the medical aspects but there's not an awful lot about the social model of disability and how it impinges on other aspects of, of life. |
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Ask questions and get all the information you need at the time of the consultation.
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I think, I think, ask questions. If you come away from a consultation, whether it be with your consultant, GP, one of the ancillary people looking after you, the idea is that you never come away with more questions than you went in with. I think I would actually seriously say to people, “Seek information, plan your appointments and, and actually focus on getting, maximising your time.” So actually, I, I truly, believe anyone with a long term condition, you go to the hospital, if you're in a area where you don't get seen that often, it might be you only get seen once every 6 months or whatever and I think it's important you maximise that time.
Build a rapport. It's worth getting to know the consultant. It, it is really worth planning the appointments and, and maximising the benefit. Especially if you've come out of there and there are still unanswered questions and you know you've got to wait another 6 months to get the answers. I don't think there's anything worse than that, it's soul destroying.
And I would actually suggest to anyone, if they are in a situation where they don't feel that they're, they, they've got all the time they need, don't wait to be told when the next appointment is, ask there and say, “I have got more questions, can I come and see you again when I've, when you've got more time to deal with this?” And I think it's very important. If you ask any consultant for information they will give it.
They will give you their time. The thing is, they won't bombard people because it, it's a two way street. But, you know, it's down to the individual to ask and seek the information. There is the information out there but, you know, you've got to be, you've got to ask for it basically. That's the one thing I would say to people. And don't be frightened of asking for help with, with the condition. |
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Things have changed a lot since her symptoms started in the 1970s - doctors are now less formal and more willing to talk.
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Yeah, I mean, like I say, it was the '70s so we weren't so computer-focused. It was going to research libraries and medical libraries and looking, looking things up and looking up if I had tests, for instance, after I had the muscle test, the EM, Is I think it was, I went out and looked up all the possible potential conditions that there were looking at which was very scary. That was why I was quite glad when it was rheumatoid arthritis but realistically it was just trying to get a handle on why I was being tested for these things.
I couldn't quite understand it, I didn't understand half of the questions but then again I think we're far more less formal when we go to doctors and consultants now than we were probably when I was a teenager, you know, I, I don't have any qualms of saying to any of the medics looking after me, whether it be GP or consultant or clinical nurse practitioner, “This aspect has caused me a problem.” It may well be RA related, it may not be RA related but I don't have a problem with broaching that and then saying, “Well how will that impact on my arthritis?” You know, so it's, like you're looking at the bigger picture rather than sort of pinpointing bits of it into one area. Yeah, that's important. |
