Thank you for letting me join the group. I was given a link on the PA page.
I am feeling very low at the moment and in a lot of pain. I am waiting on a full diagnosis, but had my xray's today, on both hands and left foot. The right foot seems to be getting signs too.
Basically I knew I had some form of arthritis, but a friend who has recently seen my hands, thinks it is likely to be RA and my GP has not dismissed it. I have enclosed photo's below.
I have not been able to grip or form a fist for a long time on both hands. My left hand is the worse, I am only glad I am right handed. I feel the cold always which I put it down to having both underactive thyroid and B12 deficiency, pernicious anaemia and vitamin D deficiency.
I find it difficult to bear weight on my left foot sometimes, almost drag my foot. But in recent weeks, the pains in my hands have got worse. They are now very swollen and red at the joints. Have had to take my wedding rings off. Even water is painful when I wash my hands. A hot water bottle seems to bring comfort. The pain sometimes, is a bit like having a hammer slammed on them.
Tomorrow, I am having my B12 jab and blood tests. Also an ECG as my heart rate has been a little erratic, although my BP seems to be staying in the normal range. Also my eyes get very sore, like stinging and sensitive.
Just wondering if anyone can give me some advice please, I would be very grateful. Thank you in advance.
My best wishes and take care
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JOLLYDOLLY
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JOLLYDOLLY welcome. Diary is a good tool especially the first year as you can get overwhelmed with it all and working through pain, meds and then the mental issues of acceptance if you have RA or other.
I am coming up to my first year of treatment and lots of highs and lows BUT everyone responds differently there is no size fits all. Rest patience and be kind to yourself.
Thank you Deeb2908, did you have similar symptoms to mine? All I seem to do is rest and get so frustrated with myself. My hubs thinks I am too hard on myself. Just feel I am a burden at the moment with everything else as well.
I think a diary is a good idea. Does the medication work for you, is it an inflammatory medication and or stronger painkiller?
I have been on prednisone whilst I was waiting to start Methotrexate pills last Oct then went to injections on MTX in Jan due to side effects of nausea etc. I got taken off MTX in Feb as side effects still bad and chest infections. Back on during lockdown as I needed something and MTX helped the blood counts and pain but side effects still bad even taking it every 9days instead of 7days. Then had a severe reaction to penicillin and ibuprofen so now off everything and restarted Tues on Sulfasalazine.
I take cocodomol as my pain killer. Steroids weaning off as due to my severe reaction I was put on high dose for a week of 40mg so now weaning of them.
MTX is good for many I am just one of those who has to try others to see what suits me.
Pain levels medium in arms and feet at moment but swelling bad in hands and ankles.
Gosh! you have had a rough time of it these last months. I am a bit worried about steroids, due to the fact you can weight can't you? I have trouble losing weight as it is, especially as my mobility is not brilliant these days. I am not good with ibuprofen but ok with penicillin. So what are the MTX and Methotrexate are they for inflammation?
JollyDolly if you type in search bar MTX or methotrexate on the NRAS webpage it explains it all brilliantly and goes through all side effects and what good it does too.
Hello and welcome. Sounds like you have got quite a few problems with regards to your health. I hope you'll be able to find help for all of them. I just wanted to say that your middle finger looks exactly like mine when I was diagnosed. I have psoriatic arthritis without psoriasis though but it was initially diagnosed as seronegative RA. I can relate to the pain when your fingers are this swollen. Ice packs seem to help my joints when they are inflamed and anti inflammatories. Don't overuse your hands. It's likely to irritate things more. If you do receive a diagnosis then there are plenty of different medications available to you
Thank you for replying. I did not know there was so many types of arthritis. So what is the difference between psoriatic arthritis and seronegative RA - do you get referred to see a Consultant automatically?
I hope you are comfortable and not in too much pain?
I love crocheting, but I suppose that will have to be reduced quite a lot.
Yes there are lots of different types of inflammatory arthritis. Unfortunately they can seem similar in some ways and can make it difficult for even the rheumatologist to distinguish. Seronegative just means that your blood results don't show any particular markers for RA. Some GPs don't know that you can still have RA though. So make sure you ask for a rheumatology referral.
I've had this disease for 5 years and I'm 25. It probably took almost 2 years to find the correct medications but now I'm doing fairly well. So don't worry. You might be able to crochet again with the correct help
Sorry to jump in but, unless it causes pain now, there is no need to stop your crochet. I had to stop knitting and crochet briefly in the early days but now nearly back up to speed. I believe it helps my hand mobility
Hi Jolly, as dear Deeb says, a diary is a good idea as you can tell your consultant and doc what’s been happening. Often you forget things, especially when you’re in a lot of pain. It will get better but at first it doesn’t seem like it ever will. Once you get a diagnosis the consultant can start you on appropriate treatment and then you can move towards feeling much better, and you will but it isn’t always a quick thing with some meds so I agree some patience is needed, Speak to your consultant/doc re pain management and any physio you might be able to have to help you. Hydrotherapy helped me so much at first to get seized up joints moving, but I’m not sure those aqua therapy is happening at the mo. Be kind to yourself is good advice indeed and I would say exactly the same. Pace yourself and don’t try put yourself under any extra pressure. Your fingers do look like mine were at RA diagnosis .. hot, red, swollen and unable to bend or easily use. I hope you can soon start some treatment to help you back to getting this under control instead of it controlling you. I hope you have someone at home to help you do housework and meals etc. You need a helping hand or two when you are slowed down, feeling under par. Let us know how you get on with your tests etc. x
I appreciate your help and advice. Yes I have a wonderful hubby that has been my semi carer for some time, due to other health problems. He has osteoarthritis, so we help each other.
I just get so frustrated with myself, I tend to keep a lot to myself because I find with my other health conditions, people do not understand. So I just say I am fine. It was a friend of mine, that notice my hand and was quite shocked. I have been in shielding since the lock down began, so today was only the second day, I have not been anywhere outside of going to the Dr's! Another trip tomorrow. (I smile).
Fortunately, we do a lot of batch cooking, so that has helped us in the past and now into the future.
Hope you are coping well and as pain free as possible.
Hi Jolly, so sorry that you're in pain. Your hands look much like mine when the arthritis flares. I have sero negative rheumatoid arthritis, but in the early stages of was pain and swelling in hands and feet that made my GP refer me to a rheumatologist. Like you I find heat helps when they are really painful. Please don't despair, there are lots of medications to help once you get a diagnosis, but the first step is a referral to a rheumatologist. In the meantime maybe your GP would prescribe an anti inflammatory medication.
Like you I enjoy crochet, I have found using hooks with a bigger, softer handle helps,my set were bought on line for a very reasonable cost and have rubber handles. I try to crochet in bursts of maybe 15 minutes then rest my hands a while before doing a bit more, also I find I can cope with making smaller items like squares or hats and scarves, but the weight of a blanket in one piece aggravated the hand pain. A referral from rheumatology to an occupational therapist was really helpful for advice about better ways of doing things, useful gadgets and how to protect joints.
I wonder so you could ask your GP for a referral to rheumatology?
Thank you rounder for replying. What does negative RA mean compared to the other types? I will ask to see a rheumatologist, if not offered by my GP.
I do have the rubber handled hooks for crochet, as well as my old faithful hooks and I tend to make small squares for blankets and baby stuff. But will take your advice on small bursts. Big blankets have hurt me in the past due to the weight.
Thank you again and hope you are pain free, take care
Rheumatoid arthritis is an inflammatory disease where our own immune systems attack our joints causing inflammation and pain, often with swelling and heat. It often starts in the hands and feet, and usually affects pairs of joints, so both wrists, both knees etc, though mine started with single joints inflamed randomly for a few days then settling again. Most people with RA have a rheumatoid factor identified in a blood test, but not everyone has that marker, but the symptoms and disease progress are the same, that's called sero negative RA which is what I have. There are lots of kinds of inflammatory arthritis, but generally they have similar symptoms and similar treatment, but in the UK it's usually diagnosed by a rheumatologist looking at blood tests and symptoms. As others have said keeping a diary and taking photos when joints are inflamed can help with getting a diagnosis. Another symptom is fatigue.
Has your GP actually referred you to a Consultant Rheumatologist?
If not I would suggest that you ask for a referral ASAP, to either confirm you have some form of RA & commence treatment...or if not RA...the Consultant will refer you to whichever Consultant he thinks appropriate.
Hi, I have only had the xray's today and blood tests tomorrow. So hopefully I will know more in the coming days. But will ask to see a Consultant if not offered. Thank you AgedCrone.
I agree with others, you need to see a rheumatologist. GPs often have little experience and knowledge in inflammatory arthritis, or are out of date as the treatments have changed in recent years.
I was really low when I was diagnosed, not helped by the pain and overwhelming tiredness (a symptom of the disease). I really couldn’t imagine that my life would be normal again, and thought I would have to stop doing many things I love doing. But although the first year was awful, once we found the right treatment for me things changed dramatically and I got back to 95% normal. That was 10 years ago and I’m still pretty normal.
Thank you for your advice and support. I agree about GP's as a rule, but to be fair, my GP has been very supportive through the pandemic and especially now, only spoke to her on Tuesday, sent the photo's and immediately she sprung into action. I have blood tests this morning and xray yesterday.
I am glad everything changed for you with the medication and you can lead a mainly normal life, that gives me hope and encouragement for the future.
Hi and welcome to the group. I really feel for you. It is a very difficult time before you are diagnosed. You need the blood tests asap then your GP can refer you to Rheumatology. Once you have a confirmed diagnosis you will be given medication and probably an injection. I know you feel very down just now but please be assured that there are people and drugs to help you. In the meantime you can come on this site and share your worries and concerns. We all understand as we have all been where you are. We can't give you health advice only the experts can do that. There are many well meaning people who will 'advise' you on what worked for them etc but you could be doing more harm than good if you act on this advice. Wait for the medical experts to guide you. I hope you get an appointment very soon. x
Thank you so much Sheila_G, I appreciate your kindness and advice. I am having the blood tests this morning. My left hand is the worst especially right now, my right hand not so bad, but sore. With everything else going on, I could do without this, but if it can be helped, then I am all for it. Lets hope with the appointments, they come through soon, but they all seem to be phone consultations at the moment due to the pandemic.
Hope you are ok and keep well as possible. I will post when I have a diagnosis.
Hello there. That hand does look tense and sore. You seem to have a listening GP, which is good news, but as others have said, it looks like you need a referral to a rheumatologist.
In the meantime try not to overuse repetitive movements (like crochet or knitting) . It’s a personal thing but I find that wearing fingerless compression gloves
helps me use my hands with less discomfort and reactive swelling.
Hiya JOLLYDOLLY, welcome. Lovely name! Unfortunately your pic does tell. That you already have an autoimmune condition in hypothyroidism too, if you have one AC it can follow that you have another (or others) so it would figure that the test will confirm most likely RD.
You've received good info, not much more I can add except maybe having a peruse through the NRAS site, familiar yourself with the condition & the meds used to bring control nras.org.uk
Please keep us updated. If there's anything we can help with meantime just ask, no question too silly, we each had the same start so we know how you must be feeling just now. Your GP obviously has knowledge of the condition, that's a big positive, so any questions you have which are medically related she should be of great help to you. 😊
Thank you for your kind and warm welcome nomorewheels, I like your name too!
I have already had the xray results back surprisingly. So have spoken to the dr who has confirmed in her opinion and the report that I have osteoarthritis in my feet and both osteoarthritis and Rheumatoid arthritis in both hands, quite advanced, especially on left hand. As I said on another post, didn't know you could get both at the same time. Just waiting on blood results now, so might be back tomorrow. (try and keep fingers crossed - ha ha)
I was diagnosed with both RD (seropositive) & OA (secondary) back in 2008 when I was 48. The OA is affecting lumbar & cervical spine plus both hands. The affected joints on my hands are the ones nearest the nail, the distal interphalangial joints (or DIP joints) if that helps you. The proximal interphalangial joints (PIP), the middle joints, are the ones RD attacks. My RD is worst in my feet, the only affect joints when I was diagnosed, though is it elsewhere I don't have issues my feet give me. Yes, once you have your blood results back pop back on. Take care til then.
I have had terrible problems with my back in the lumbar area for over 20 years, they will not scan or xray me, just say it sciatica and get off my arse and walk! but I know it is OA, I am convinced of it. The pain is like a red hot poker/slicing me in half as it is so intense. It affects my breathing.
Regarding my hands, it is the middle joints and the ones by my nails mainly but I think the joints attaching the finger to the hand/palm is hurting today. Although they xrayed my left foot, most of the pain is in my right foot, which they did not xray, so I will mention it next time.
Thank you nomorewheels, I appreciate your help. Take care
Sounds all too familiar I’m afraid. Rheumys generally concentrate on RD, somewhat understandably as OA is wear & tear not autoimmune, but do make a list of everything so nothing is missed. I omitted to say that the metacarpo phalangial joint (MCP) or knuckle, the ones that are giving you particular trouble today, are also the ones RD attacks.
Ok thanks for the information nomorewheels. Perhaps when I mention it, she/he might ask for me to be referred to see a OA Consultant, anything to start the ball rolling. Just want some mobility back, if possible.
Unfortunately there's no such thing. Rheumatologists deal with OA, though as I said before it does tend to come second to RD, but still do include all your issues, he/she will need to know all your ouchy bits whatever the cause.
You have been having a bad time and those hands look as though they’re very swollen and painful. Other forum members have given you some excellent advice above.
I agree that you need to see a consultant Rheumatologist to get a diagnosis so that you can get started on a treatment quickly. If it is Rheumatoid Arthritis then the sooner the better to avoid more damage to your joints.
Meanwhile do keep a record of your symptoms in a diary so you can see any patterns or variations to mention to the consultant. You could also look on the NRAS site to see what to expect at your first appointment with the consultant.
Thank you Lolabridge, been told by the GP that it would indicate that the xray's indicate that I have osteoarthritis in my feet and both osteoarthritis and Rheumatoid arthritis in both hands, quite advanced, especially on left hand as in photo above (didn't know you could have both to be honest). So waiting on blood results, which might come back tomorrow, with a bit of luck. Hopefully then get referred to see a consultant.
My husband sent me the link for the NRAS website as he as osteoarthritis himself. The joys of getting older I guess.
I have got a diary, so will put regular updates in it.
Thank you and hope you are keeping well, best wishes and take care
It’s possible to have RA affect feet too not just osteoarthritis. Unfortunately many Rheumatology consultants ignore RA effect on feet so don’t let yours do that. I find mine trouble me a lot and reduce my mobility considerably so I insist mine are considered.
I think there is inflammation in my right foot to be honest as it is very sensitive and quite red by the toe area. I did wonder if it was gout! But the Dr did not seem to think so.
Just had the xray results back, so waiting on blood tests. But the xray's indicate that I have osteoarthritis in my feet and both osteoarthritis and Rheumatoid arthritis in both hands, quite advanced, especially on left hand as in photo above (didn't know you could have both to be honest). Not been given any anti inflammatory medication yet, I am guessing it will depend on blood results. Just taking paracetamol at the moment and keeping a hot water bottle close by, even on a hot day as it soothes the pain. Just feel exhausted all the time, ridiculous.
Thank you for the advice, fortunately I have a diary, so will keep it up dated. How long have you had yours?
Just wanted to welcome you Jollydolly. You have already had good advice from everyone so I have nothing to add other than to say good luck and let us know how you go on.
Thank you Biofreak I have just spoken to the GP as surprisingly, my xray's came back this morning. I have osteoarthritis in my feet and both osteoarthritis and Rheumatoid arthritis in both hands, quite advanced, especially on left hand. Spoke to the dr and now waiting on blood results. Also etopic heart rate, which is ok, evidently nothing to worry about, just that occasionally I either miss a beat or I gain a heartbeat.
If I am spelling this wrong, it is because I am in the sun light, so can't see very well. Might get blood results back in the next day or so - so excuse the pun, keeping fingers crossed and then perhaps I will get referred to see a Consultant.
That's definitely a step in the right direction. A diagnosis is the first step on the road to getting some of your life back. I hope you get to see a rheumatologist soon so that you can begin treatment. Best wishes and good luck.
Thank you all for the lovely warm welcome and all the brilliant advice. But for those who do not know, I have already had the xray results back. Spoken to the dr who has confirmed in her opinion and the report that I have osteoarthritis in my feet and both osteoarthritis and Rheumatoid arthritis in both hands, quite advanced, especially on left hand. Spoke to the dr and now waiting on blood results. Hopefully will know in a day or two.
As you've had your X-ray results back it might be worth asking your GP if she'll prescribe an NSAID (& stomach protector) to help ease your inflammation, & pain, until you're seen by a Rheumy. This is what mine did once my bloods were back, she also prescribed pain relief. I just had to stop them a couple of days before my diagnostic appointment.
Welcome JOLLYDOLLY this forum is fantastic for advice from real people who have all been where you are at the moment and some that still are. The only thing I would like to add is that a consultant rheumatologist is also an expert in all things musculoskeletal so they’re the ones in my opinion who will be taking over your care after your fab GP has done the initial tests which she has taken care of for you in a very timely manner (definitely one to keep that one). So whether you get a diagnosis of osteoarthritis with a combination of rheumatoid arthritis or another autoimmune disease I will eat my hat if a rheumatologist cannot help you with them all. Most autoimmune diseases are treated by the same drug treatments regardless of which one you have. Do be kind to yourself and don’t beat yourself up if you’re struggling at the moment, easy to say hard to do. You will probably learn how to pace yourself when you have to, it’s part of the journey. I guarantee you that everyone on here has the same saying as you ‘I’m ok’ when clearly we aren’t but please be honest with the docs and tell them how it really is or you’ll be doing yourself no favours. Good luck I’m sure things will start and pick up for you very soon diagnosis is half the battle and it seems you’re half way there.
Thank you Leics for you lovely welcome and kindness. I won't deny, I am feeling sorry for myself tonight. Struggling with the pain, but decided to rest tomorrow.
Yeah sorry for your pain I’m feeling it too. Keep up if you can with the painkillers don’t tough it out which I know I do too often. We are with you any questions or if you need just a good moan or some empathy we are always here to help. We do understand. Hope tomorrow is a better day.
Thank you Leics, I really do appreciate your kindness, I really do.
I managed to get a reasonable nights sleep with my hot water bottle! Not so stiff or painful this morning - so hope I will hear something about the blood tests and perhaps might get to speak to the GP about the referral to the Consultant/Medication.
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Waiting worry
And yet another diagnosis!
