Waiting worry

Hi, my daughter developed pain at the base of her thumb a week ago, now has pain in both wrists and hands which travels to her shoulders quite quickly after waking up. The GP has suggested RA and made a referral. She cannot write it type and with gsces pending this is a real worry. The skin turns a bluish purple briefly after using her hands to dress.

The GP discounted other conditions as the pain 'did not follow the line of tendons etc'. I am giving her ibruprofen and vit and fish oil supplements. She is wearing elastic acting supports and using a slings which give relief from pain. A hot water bottle on her hands also helps.

I am a single mother but have saved for a holiday, would anyone advise going private for quicker diagnosis and treatment as her GCSEs are more important than a week on holiday.

17 Replies

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  • Hello there. I am sorry your daughter is suffering so much pain. My only helpful thought is for you to apply for extra time to allow your daughter to finish her exam papers etc. I know this is possible as I have friends whose teenagers were awarded this for various reasons. I do hope your referral comes through very soon. Thinking of you both.

  • Hi. If you contact the school and explain the problem they can arrange extra time but also a scribe to write the exam response. They would set up a separate exam room so that your daughter could verbally dictate her answers to the person acting as a scribe. I am university lecturer with additional role as disability support and work with students with disabilities and know that schools also set this up for pupils. Schools come under the Equality Act 2010 that replaced the old Disabilty Discrimination Act so if you encounter any problem with the school, remind them that they have a duty under the Equality Act (they can face serious fines if they discriminate). Once a possible disability is disclosed (joint problems and possible RA diagnosis would be considered a disability) the school must act and put in place Reasonable Adjustments.

    As the exams are fast approaching, You need to contact the school as soon as possible, as this takes time to set up and for them to be able to source a scribe. They can put temporary exam arrangements in place even if your daughter is awaiting a diagnosis (the school will probably need a letter from your GP) to cover this. If she is seen by Rheumatologist (as she is a young person, she should be on a priority list for this) then you can ask Rheumatologist to write a letter for the school. Don't worry if they set this all up and your daughter improves and does not need these adjustments, it's better to have it in place and not need it.

    Your daughter may be embarrassed at having all this fuss, but her exams are important and she is entitled to have all this support, just remind her that she would have this support if she broke her arm and was in plaster at time of exam.

    I hope she is seen soon at Rheumatology and that she able to be supported to sit her exams. Please do let us know how you get on. Best wishes, Anne

  • Thankyou, she has to wait a week for blood tests and perhaps another week for results, no idea how long before Rheumatology see her. I plan to ring next week to get an idea. I have read a bit on the topic and the fact that a delay in treatment can be damaging is a concern. I did ask for a letter but the surgery of a policy of no longer providing the. Think it might change my surgery. She is very independent and self conscious about her answers, but at least it allows her to do the exams. Hopefully, diag and treatment will reduce need at A level. As I said above, art and tech is a difficulty but fortunately she has most of her work for this finished.

  • The waiting game for tests, results and referrals is a hard one. It sounds as if you have been very proactive in self managing the problem to date (heat compresses, support gloves, etc) - well done!

    To answer your question about delay in treatment. I was diagnosed a year ago and had rapid onset of symptoms like your daughter. I was seen at Rheumatology within in two months. Now that was in Scotland so if you are in England the waiting lists may be shorter/longer, but I do know that the GP said there was a faster referral for young people. The delay in treatment refers to people who delay going to GP for whatever reason (it will go away, get better, etc) and leave it many months, even years before they seek help. The evidence suggests that the sooner treatment starts there is a tendency for there to be less deformity of the joints. So please be reassured that you have been timely in seeking medical help. The blood tests will test for RA factor and inflammation levels that will assist the Rhuematologist to diagnose the condition. The Rheumatologist will examine all the joints and may send you for further tests - the first appointment usually takes a couple of hours, so take something to read and something to drink with you. I think NRAS have a leaflet about preparing for your first Rheumatology appointment - well worth a look at.

    Coming back to the school and exams . Please do contact the school to arrange to see them as soon as possible. If they are not already aware of your daughter's joint pain, this is urgent. They will advise what they need, i.e., GP letter, in order to get the ball rolling for adjustments for exams. I hope you haven't been fobbed off by a busy receptionist - make an appointment to see the GP who referred your daughter and ask for a letter to confirm she has joint pain and that he has referred her so that she can have reasonable adjustments put in place for her exams which are soon. You must be proactive as your daughter's education is so important especially if she is thinking about going to university.

    On a positive note, one of my colleagues has a daughter who was diagnosed with juvenile RA, when she was still at school and now she is happily attending university and getting on with her life.

  • Hello

    It sounds like a problem with circulation if the fingers turn blue, although not been a Doctor I cannot diagnose only your GP can do that. There is also a condition like that in the toes as some people seem to have circulation that is poor to their extremities. There is a complaint that causes a restriction to the thumbs as well.

    At the moment ask your daughter to rub her hands before and after use, also the area of the wrist that may aid circulation. Remember I am not a doctor, therefore cannot diagnose only suggest

    BOB

  • I really don't think it's worth seeking a private consultation. This is not meant to be negative, but being realistic if she does have RA or JIA it can take several months before treatment starts to have an effect so if even if she was treated tomorrow it is unlikely to make a big difference for her exams. I suggest it's far better to focus your energy on getting help for the exams themselves like the suggestions others have made.

    The other thing is to speak to her GP about getting stronger anti-inflammatories in the short term as they can be really helpful, and sometimes quite magical in relieving symptoms. And although a lot of texts talk about the "window of opportunity" in starting treatment it is really very vague as to how long after the very first signs does this window start. I've come to the conclusion that it means that it's important to start treatment within three months of when the disease has fully established itself - ie constant swollen, hot, throbbing joints etc. By the time I was diagnosed and started treatment I was nearly bedbound, and it was nearly a year since the first hints of something being wrong, but I'm absolutely fine now.

  • may i ask what those first hints of something being wrong were?

  • I would get unexplained pain in different joints, mainly hands and feet, sometimes with swelling but not always. It would last maybe a week to 10 days, so never really long enough for me to get sufficiently concerned to go to a doctor. And then it started to happen more often, so never without at least one painful joint. And then the degree of pain and swelling increased. Which was when I started the diagnostic journey.

  • thanks for the reply :-)

  • As helixhelix says, deciding on a diagnosis and therefore treatment can take time and rightly so. Sometimes however diagnosis is speedier and there are 'quick fixes' such as steroid injections which take effect much more quickly than the longer term treatment. Given that your daughter's so young, you may be able to get an appointment with a rheumy pretty quickly if you and your GP push for that.

    But all the advice you've had about seeking the school's support is excellent. If an appointment can't be made quickly, or even if it can, perhaps it's best to keep things as calm as possible. Stress can be an aggravating factor in inflammatory arthritis and important as they are, GCSEs can be postponed or re-sat if necessary.

    You sound like a great mum. I think I had my first flare up of PsA as a teenager, though it wasn't diagnosed at the time. In fact if what happened then was PsA, it went underground for decades - I was finally diagnosed at 56 years of age. A lot can happen with RD .... not all of it serious or negative by a long chalk.

  • Thank you for all replies, reassuring and encouraging. I appreciate you all sharing your experiences and thoughts.

  • I wouldn't rule out going private by getting a quick appointment with the rheumy she'd see under nhs. Not ideal but sometimes it's good just to speed things up

  • Update- after attending different Hp through out of hours she was prescribed Diclophenic which has helped but didn't cure. But he does not think it is RA and basically said, no clue we will just wait. Meanwhile she has no use of her hands without pain.

  • Diclofenac should help reduce inflammation & why she's finding it's helping, I hope it continues to be of help until her appointment time. I wouldn't be overly concerned about the thoughts of anyone but a Rheumy, they're best placed to consider whatever is the root of her problem. Without proper imaging & other testing & examinations it's not easy to pin point just what is the cause so unless the HP she saw is familiar with what to look for or did the tests necessary to determine what is causing the inflammation then I don't think the comment was particularly helpful at this stage of uncertainty, certainly not saying "just wait". It's commonly recognised that the earlier the diagnosis after first signs the better the prognosis & this may not be the case for your daughter.

    Has she tried using hot or cold compresses to ease the pain? It may help somewhat. You probably will anyway but do keep pushing her GP for a referral date, this will give you some indication whether it would be prudent to fast track by paying for a private consultation. I didn't have to do it for RD but I did for another condition, consultation & exploratory op which we paid for as we didn't have insurance. Prior to that I ensured that it was possible to transfer to the NHS with the same Specialist so best just to check that this would be the case with whoever you choose if it comes to that. I hope it doesn't but it is a consideration when you don't have insurance. Do keep us updated won't you.

  • Up date. daughter's pain is increasing and joints on her hand flare red at night. She is demoralised and anxious about her exam and watching her suffer is hard. I know some children are much worse off but I decided to go ahead with a private consultation. Her appointment is in 10 days, probably not enough time to address exams issue but hopefully ease both her anxiety and pain. Fortunately I managed to save a bit this year, healthcare is a lottery, but with a modest amount of money you can rig it. That is quite shameful and infuriating. Hopefully, a diagnosis will access treatment on the NHS, as I don't think funds will stretch far into that. Meanwhile, we practice using a scribe in exams and my inability to write chemical equations without being told where the numbers go, astounds her!

  • The sooner she sees the right consultant the better. If she does have RA it is better to have it treated as soon as possible. I went privately because of the long waiting list and wish I had gone even earlier. However, maybe you can pressurise your GP?

  • I hope sincerely your daughter has gained good results in her GCSE's. I was thinking of you both when the results came out Thursday last. Wishing you both all the best and many healthy days ahead.

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