It has been confirmed on X-ray that I have bilateral erosive inflammatory arthropathy to my wrists , conducive with rheumatoid arthritis along with raised rheumatoid factor. I am just waiting for my consultant appointment . Which isn't for 6 weeks... I am a new mum and finding it difficult at times to hold and care for my daughter without pain and weakness...
Any information on what I can expect from consultant appointments, treatment etc and any suggestions on managing my symptoms would be greatly appreciated. ( honesty is welcome!).
I'm feeling rather alone with this at the minute and anxious due to long wait until consultant appointment ..
Thanks in advance for responses x
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Wowwe-232
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Congratulations on the birth of your baby. So sorry you are in pain and difficulty. Not surprising that you feel anxious and alone. Six weeks is a very long time to wait for an appointment for diagnosis and treatment when you are nursing a baby and have difficulty changing nappies etc.
Would like to suggest you go back to your GP asap or speak to your health visitor if you have one and ask them to help get the rheumatology appointment sooner. You clearly need to see a consultant soon. If you are feeding the baby yourself you will also need guidance for pain killers. Maybe some wrist splints will give some relief too in the interim.
Thankyou birthday girl ☺️... Yes I think I will give health visitor a ring tomorrow and just explain things... It is difficult with pain relief as youre right ! as I'm nursing my daughter it's very limiting as to what I can have... I have some basic wrist supports but think I'll look for some more heavy duty ones.
Once again thanks for advice... Really appreciate it x
Glad it helped. You definitely need some medical support to get you through this painful and scary time. Glad you found HU. The NRAS website also has lots of useful advice and links. You can also phone the NRAS helpline. You don't have to be a member.
Hiya Wowwe-232 & welcome. Well, congratulations on your baby girl but commiserations you've needed to join us. It's a difficult period this, waiting for your first appointment & official diagnosis, more so with a baby to care for. Has your GP not discussed any form of pain relief or anti inflammatory to ease things whilst waiting for a diagnosis? This link might prove useful if you're considering seeing your GP again for pain relief, not being able to hold your daughter must be heartbreaking nras.org.uk/breastfeeding-r...
Normally what happens at your first appointment is further blood tests & possibly a urine sample is taken, imaging (x rays usually) & a full body examination so be prepared & wear clothes you can get on & off easily, oh & decent underwear! I wasn't prepared for that & was totally mortified I didn't have matching undies on, stupid I know in the grand scheme of things but if you're anything like me it's important & you did want honesty! Make notes on the lead up to your appointment, similar to a daily diary, how stiff you were in the morning & for how long, any noticeable differences as the day goes on to when you go to bed, how you've slept (or not) etc, bullet points so that your Rheumy can understand if he wants to read it. Do be honest, your Rheumy needs to know even if it's something that comes & goes, even if it's just a niggle. Also if you have specific inflammation anywhere take photos, that can be helpful especially if it comes & goes. You may be asked if anyone in your family had any inflammatory conditions or autoimmune diseases, ask family members if you're unsure, even if it's going back generations, grandparents etc, that can be helpful. Take a note book & pen, especially helpful at your first appointment as there's a lot to take in & terms used & med name may be unfamiliar. It helps to write down any instructions such as when to take any meds you're started on & such, Rheumy's writing is no different from another doctor & often illegible! Also if you take any medication list them, your dose & how frequently you taken them.
If you can ask if someone would accompany you, it will help if you forget anything to put your heads together, it's daunting too your first time so you may appreciate the support. I was diagnosed in 2008 (seropositive) & my h still comes with me to all of my appointments, it's been very helpful at times! Don't forget to let him know you're still breastfeeding, it could be important when considering your treatment plan. If your GP prescribes you anything for your pain &/or inflammation it's a good idea to stop them a few days before your appointment. My GP prescribed both pain relief & an anti inflammatory after my blood tests came back pretty conclusive to take until a few days before my diagnostic appointment a fortnight later. The reason being good your Rheumy needs to have unmedicated baseline results on any tests & the examination to diagnose & determine your starting treatment. I think that's everything but if you think of something I've not covered just ask, someone will reply.... we've all been there!
So, now you're not alone I hope you'll feel a little less lost & hopefully a bit less anxious about what to expect. 👫
Thanks so much for all of that information. It really is helpful to have an idea of what's going to happen and what to expect! ... Especially the matching underwear bit ;). I would also have been mortified if I wasn't prepared for that!
That's helped me feel a little more prepared for what's ahead and I certainly feel less alone so thankyou for that! It means an awful lot... x
If it is warm you cannot beat a short sleeved top and long shorts/skirt - I don't always have to take too much off then. Unfortunately you will probably not get all the answers you want on the first appointment. It is usually a longer process as they will need to analyse any xrays, blood tests etc that you have done. There are many treatments that can be offered although there is no easy way to tell which will work best for you so it is a case of trial and error and most of the drugs take up to 12 weeks to get to their full effect. NRAS website has a section on drugs - the first stage would be DMARD's. Unfortunately if you are still breastfeeding you would probably need to stop before commencing treatment (for my last child I had to do that).
For some diet will make a different to this disease but the damage is hidden inside the joints and most people will need some meds to keep the disease under control. As you will probably have realised from reading on this forum no two people's experiences are the same - there are so many variations of this disease. Many people once their medication kicks in are able to live a normal life and have no need for this type of forum so those on here are not really representative of the whole community. Good luck. Farm
Which other bits of you did they look at? It was just my feet, hands, elbows that were examined, and my knees. That and the X-rays showing erosive damage and the blood tests were considered sufficient for a diagnosis of RA.
How would looking at other regions help? Are there other diagnoses that might be relevant that would have needed more scrutiny?
I had imaging which showed erosion in my feet plus the blood tests but my whole body was examined when I was first diagnosed & only my feet were affected by RD at that time but also OA was diagnosed which could have been misinterpreted if I hadn't had a full examination unclothed. At my first Consultant appointment again I was asked to strip & the DAS 44 performed again which also includes the neck, jaw, hips, ankles feet in addition to the points on the DAS 28. It wasn't always necessary to strip but if I had a specific joint troubling me clothing was removed from that area. When I moved back to the UK & had my first Rheumy apppointment I was asked to strip & the DAS28 was performed, excluding feet. I don't think undressing is always necessary at reviews although my Rheumy nurse tried to check my shoulders through my jumper & my knees through my jeans though which I couldn't understand, so my h pulled each leg up so she could examine them properly. You can't perform an accurate palpation test through clothing in order to determine the swollen & tender counts included in your score, I know mine hasn't been accurate in the past. It can make a difference because if a joint isn't included there could be disease activity around untested joints & left untreated. This happened with me because my Rheumy wouldn't examine my feet as they're not included in the DAS 28 & I now have damage. I've not had x rays done since 2013 which may have been helpful to prohibit the damage caused. I did ask when she wouldn't examine my feet but she thought it unnecessary because my bloods were fine!
Thanks, here in the UK they maybe do rather less than elsewhere? I've never complained about my hips so that could also be why they haven't been examined.
My hips click, always have since before diagnosis! Yes, UK guidelines recommend the DAS 28, where I was diagnosed it's still the DAS 44 I believe. I think as long as you make your Rheumy aware of any changes & as long as that joint is examined any changes will be then picked up on & meds amended accordingly.
I'd echo the good tips NMH has given you, so won't repeat.
But to add, in the meantime don't forget that wheat packs, heat packs and ice packs can really help aching joints. Especially if you're having to avoid strong painkillers. And many people find perneton (green lip mussel) gel very soothing, which I think (but do check) is also ok if you're breastfeeding.
It's a horrid period this one, so try not to fret and enjoy your baby instead.
Just to add as helix reminded me (thanks!) Both my h & I have found Pernaton gel handy for sore joints. As it is a natural product I think it should be ok for you to use but check with your Pharmacist, it's available from chemists (Boots & you may find your local independent chemist sells it, mine does), health food stores (H&B) & online. One thing though if you do try it make sure you wash your hands after applying, it has a cooling effect followed by a warming effect & not recommended for children. I made the mistake of rubbing my eye before washing my hands, I've not done it again!
Hi - just a note to say my daughter had this and was told it was with having her first child at 30. She still breastfed. Hope all goes well with you enjoy being a mam.
Hi Kai, your posts interest me. I am doing the clint pad disown diet, it was hard for a while but I think I am starting to feel the results. What about you. What do you have and how are you approaching it.
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Awaiting Consultant Appointment - Bricking it
Spinal Consultant appointment.
How my first appointment went.....
Blood results and first rheumatology appointment 
