Hi all, as per my previous post Ive been found to have bilateral erosive inflammatory arthropathy to my wrists.... I'm a new mum, My appointment isn't until 6th June... My symptoms are getting worse ( not only pain), my wrists feel like they are locking and grinding, I feel like there is a nerve getting trapped between my wrists and palm and am getting tingly palms and fingers.... Apart from codeine and diclofenac gel the gp says there isn't any more he can do and to wait for rheumatology appointment....
Has anyone been in a similar situation and was there any way that rheumy appt got fast tracked due to symptoms progressing and getting worse?
It's getting harder to look after my little girl and I'm so worried the damage will be irreversible...
Thanks for replies in advance. X
Wowwe 232
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Poor you, must be hard with limited options for pain relief. There's certainly no harm in asking for a faster appointment, although in most places rheumatology is so overloaded that it doesn't often happen. But if you're able to do things at short notice then it could be worth phoning regularly to see if there's a cancellation.
When I was first diagnosed I went downhill very fast - and the period between getting referred and actually having the first appointment with rheumatology was hell. By the time the appointment arrived I could hardly walk, getting to the bathroom was a nightmare, and I couldn't hold a cup or cut up my own food. I thought that was how i'd be for the rest of my life. I was wrong. The rheumatologist told me to have confidence in the treatment, and she was right. So it is completely amazing how once the disease is under control things can turn round. Basically 99% of my problems were reversible to my utter surprise (and delight!). Courage, things will change for the better.
I shall try phoning regularly ... It must have been awful for you but It's reassuring to know you're symptoms reversed once you had treatment and I'm pleased for you that they did .
I suggest you go down to you dept at the your hospital and ask for someone to see you as sometimes they will see emergancys if you turn up. My hospital rheumy nurse will come out and see me if i have a problem so i think it might be the same with yours. It might help as i know you don't to drop your child. I hope you get the help you need darling.xxxx
Go back to your GP ..there's a world of pain meds out there ...the thing with tingly hands sounds like Carpel Tunnel Syndrome ..I had mine done in 2011 and it made a huge difference to the pain ...good luck sweetie xx
Hello and welcome, and that sounds tough! As well as the suggestions above, you can ask your GP to 'expedite' your referral to rheumatology. That means he writes and asks them to see you more quickly because you're really struggling. Good luck!
GPs can access on-line appointments and see if there is an appt available at any hospital you can travel to, ie he has immediate access to all the cancellations at all the hospitals and can book you in immediately on line. This is particularly handy if you live in or near London. That is a quicker way of finding a cancellation than phoning the hospital to which you have been referred. GPs don't seem to like sending you outside their trust area - I don't know if they get charged more.
However, I would be a bit careful because some hospitals have a better reputation than others and it might be best to wait and see someone good - who will invariably have a longer waiting list. (I saw someone privately who was very offhand and the GP just thought I could keep paying to see him and getting nowhere. It is really hard when the GP is unhelpful.)
There is a lot your GP could do - like getting x-rays and ultrasound scans done plus blood tests. That could be evidence of the severity of your condition and would speed things up in any case because the rheumatologist may need to do some or all of those things and this will delay the start of your treatment further. My NHS rheumatologist was a bit narked that the GP had done nothing and written a very misleading letter.
I found electro acupuncture relieved similar disability and pain in my hands almost completely at one session for three to four days - the trouble with having it done at this stage is that it might mask the condition and delay the diagnosis. It also takes an hour (be careful about having a half hour session because it did not relieve my pain for 35 minutes). It did the same at the second session a week later so then I booked a course.
The GP could arrange for you to have a cortisone injection if he can't get you an earlier appt - ask and it might push him to try and get you an early appt. A lot of people on here swear by Prednisolone for temporary pain relief, which is an anti-inflammatory, but I was allergic to it and it did not work. Again, the GP could prescribe this for a few days but, again, it might mask the symptoms when you see the rheumatologist.
I also used Chinese herbal medicine. If you do not want to try the tablets, the patches are excellent for temporary relief as is their hot oil.
I know how you feel - I went through the same for over six months until I could get any pain or disability relief.
I'm not sure that steroids, either tablets or by injection, are recommended if you're breastfeeding? if for nothing else than you might end up with a very wide awake baby! Same with Chinese herbal remedies - I personally wouldn't risk them when breast feeding.
And not all GPs can access all hospital appointments systems - mine certainly can't. They can check up on a couple of specialities, but not rheumatology. I think there is a wide variation in how up to date systems are.
But the idea of pushing to get some imaging done sounds a great one.
Breastfeeding did not occur to me. I was just trying to think of a few helpful suggestions.
I have taken the following from the NHS website about the choose and book on line booking system. The GP can do it or you can do it yourself.
Traditionally, your GP writes a letter and the healthcare provider allocates a date and time for your appointment. This could take several weeks and the date and time offered may or may not suit you.
With NHS e-Referral Service you can book your appointment online at the GP surgery or via phone using The Appointment Line 0345 6088888. You will also be able to choose a date and time for your appointment that is convenient for you. This may indeed be quicker.
If you wish to think about your options first you can still do that and then book your appointment at a later stage. See the above section about ‘How to book, change or cancel an appointment’.
I only knew about it because I went back to my GP (as I was disabled and unable to use my hands or shoulder because of stiffness) and he logged on to the website but there was nothing earlier available and he told me to wait or pay privately. I noted the choose and book option and asked the surgery but they would not provide me with another GP appt for a long time in order for me to get the code to do that. They are as unhelpful and bloody minded as hell.
I then paid privately but the rheumatologist did not do any tests and diagnosed gout, and I incurred a lot of expense in further appts and physio. I eventually got my hospital appt after six months. I then discovered, after searching the internet, that there is a walk in ultrasound service in many locations, including my local high street, for £99 per body part and no referral is needed.
If you are happy with conventional medicine, that is fine (but I was replying to someone else). I was not. I tried one drug and immediately developed viral pneumonia and there is a question mark over macular degeneration. I was allergic to Prednisolone and it was not only useless but brought me out in a rash. I was not asking you to try it but suggesting to Wowwee232 that it might provide some temporary relief while she was waiting for an appointment.
Not everything works for everybody. The index and middle fingers of my hand were jammed solid and while I was having the electro acupuncture, they started to move and relieved the pain after 35 minutes. I could not perform any common task for nine months until then. Conventional medicine has now developed a similar treatment in Holland whereby a magnet is placed under the skin, ie copied electro acupuncture which has no patent.
Getting back to Wowed has your GP taken any bloods with that level of pain and stiffness your CPR and other factors will probably be high. And that might kick his butt into prescribing pain killers which are effective and enable you to continue breastfeeding it may also kick butt again into somehow getting you an earlier appointment. Once you are in the rhuematogy system access is a bit easier.Although as someone has already said these clinics tend to be extremely busy.
It must be extremely hard the pain coping with a new baby and the lack of sleep that brings. I hope you find an answer somewhere soon.
You may find the NRSA helpline helpful to talk to.
Yes bloods taken, rheumatoid factor high and esr high but crp normal.... After weighing everything up ie; my pain and mobility and As hard as it is I decided to stop breastfeeding 2 weeks ago in order to take stronger painkillers.... Unfortunately they are not doing the trick so with all of your advice I'm feeling a bit more confident and will be back on the phone to gp tomorrow ...
That must have been a hard decision... I hope your GP recognises how hard, and realises it shows that you need help now and pulls his or her finger out to do so.
That must of been hard for you . Let us know how you get on.
Take Care. X
Hi Wowwe,
sorry you are having such a rough time of things at the moment. I have put a link below to the section on our website about pregnancy and parenthood for you to look at:
Yes wowwe, that must have been a really tough decision to make. I can only reiterate what others have said, in my lengthy experience the NHS gives most to those that shout the loudest. And I don't mean literally shout, but keep on at them. Write down your symptoms when you feel at a low ebb, as we all tend to play down how bad we feel when asked, and Sod's law always states that symptoms disappear the second we walk into a hospital or GP's surgery. Some GPs and Rheumatologists, I'm sorry to say, are busy beyond what is acceptable. And being human they will always (or at least, sometimes) take the path of least resistance. If they can give you a script and get the next patient in, job done.
Unfortunately it's up to you to have the confidence to say how you really feel. How afraid you are for your baby. How you are struggling. Don't give them an easy route out and they tend to respond. IMHO.
And it will get better, you and your baby will be fine and you will look back and think thank god that's sorted.
And you will have many years of happiness and pain, because that's kids for you. 😀
I've managed to see the GP and am booked in on Friday for steroid injections to both wrists so hopefully that will ease things a bit... I've decided As from today i'm ringing the bookings number in have each morning in the hope I'll get lucky with a cancellation ....
And yes I can't wait for the day I can look back and think thank god it's sorted...
Do keep a record of treatment for yourself. Over the years as GP's and consultants change it is good to have your own record of what treatments you have had and how you responded to it. Just an excel sheet with date, meds, dose level etc. Hope the injections bring you some relief. Your wrists may feel worse just after the injections for a short while (steroid flare) but try and rest them for 48 hours (I know difficult with a baby - just do the necessary) to give the meds chance to work in the area you need them to. May be put some ice packs in the freezer for when you get back. Good luck. Farm
Good news, I hope you get some relief from your pain. I've never had injections in my wrists so can't comment on that, but for the first few years after diagnoses I had very painful wrists and used to wear wrist splints (the hideous ones you can get for free from the rheumatology dept).
They were never going to win any fashion awards (although I got asked in a garage once if I was a boxer 😀👊💪) but they helped me a lot. You can take the metal splint out and put them on really tight, worked for me. Or there are less NHSey ones available from chemists / sports supplies shops that do not usually have the same support but also help a little. They may just give you a little more confidence if nothing else when you have to pick your little one up (for cuddles 🙂).
Funnily enough while writing this I've realised how long it's been since I needed to use them. Also these days I have a permanently inflamed left wrist, but it doesn't usually give me any bother. Strange. As someone I think mentioned earlier yours sound a bit like a carpal tunnel problem, which at least have treatment options. But I'm no doctor and they should be able to tell on examination.
I have recently removed a few comments from this thread, as during the course of a disagreement some comments started to be too personal and the comments were becoming further and further removed from the initial query and were no longer productive or helpful.
Please can I just remind you that we have people on the forum with a variety of experiences and opinions, and it is fine to voice different opinions, but making personal remarks or taking over a thread with lots of off-topic discussion is unfair, particularly to the person who originally posted.
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