Hello everyone, I am new here but I have been reading the posts here for weeks and found that people here are very kind. I'd like to write about my condition and seek for help.
My feet have been in pain for two months now and are getting worse, I can rarely walk in the morning, struggling to get to work. My fingers started about 5 weeks ago, also my knees and elbows. I also feel a bit stiff in the morning.
I went to the GP 4 weeks ago and the doctor sent me for a blood test, full blood count, ESR, Autoantibody screen, etc.. but no rheumatoid factor tested, no CCP tested. He also offered Naproxen 250mg. Couple of days later I phoned the GP and been told that the blood test is OK but I said I am still in pain so I booked another appointment to see the GP.
This time another doctor reviewed the blood test and send me to X-ray on my feet and knees, he also wrote down on the X-ray request paper ''ongoing arthralgia, no RA''. And, same as blood test, the X-ray result came as normal.
But in the mean time the pain is growing and spreading. So I went to the doctor again and he said he will refer me to somewhere else. (I feel sorry for my English I couldn't understand where..) this was said two weeks ago, and here I am waiting..
Don't know what to do now apart from waiting. Comparing to the symptoms stated on several website I am constantly thinking I have got RA. My fingers start swelling last weekend, my jaw joints sometimes in pain, I am walking extremely slow, (but I do feel a little bit better in the afternoon, can walk faster with less pain) I keep looking online for more symptoms and posts, I watch Clint's Youtube videos, I am depressed, especially I have just stopped smoking/drinking 4 weeks ago, as my wife and I are planning to have a baby next year. This makes me even feel even lower as I have read that most of RA medicine is not good for having baby...
I am a quality manager in construction, I used to walk a lot, but at the moment I rarely can stand up from my chair. What should I do. Can I ask how long it will take to receive the letter for referral? As I understand the early you get diagnosed, the better chance you have to get well. Is this correct? I really need to know what is going on in my body... Should I ask for another blood test? the last one was a month ago, there might be some changes already in the blood? Is CCP and RF needed? What about MRI? Do GPs offer MRI?
Thanks for your response. Hope you have a wonderful evening.
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dahongbudong
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HI there, thanks for reply. What kind of tests would they be? Are GPS able to do it or do they have to refer me to rheumatologists?
Hello there. I am sorry to hear that you are in pain and don't as yet have any answers from the doctors.
The first thing that springs to mind is could you and your wife start trying for a baby right now? At least that way the inevitable wait for diagnosis would be put to good use as you may need to take drugs in the near future.
There are other forms of inflammatory arthritis apart from RA. I have Psoriatic Arthritis and note that you said your fingers are swelling ...... if you mean the whole finger, not just the joint area, this could be something called dactylitis which is a common symptom of Psoriatic Arthritis (PsA). It might be a good idea to take photos now of your swelling, in case it subsides before your next appointment. People with PsA often do not show raised inflammatory markers or any other indications in blood tests. But I think if I were you I would ask the GP for further blood tests, just in case.
Again, thinking of the possibility of PsA, do you have or have you had any skin problems at all? Even minor psoriasis can be very relevant in considering PsA. And how are your nails? If they are at all ridged or funny looking, that again could be a sign of Psoriasis / Psoriatic Arthritis.
Rheumatology appointments can take a while. Given the degree of discomfort you are in you could check whether your GP has asked for an urgent referral, if not, this is something you could press for. You could also seek a private appointment with a rheumatologist, this shouldn't delay or interfere with your NHS appointment.
This must be a very anxious and difficult time for you. But if you do have a form of inflammatory arthritis the treatment can in fact work very well. But waiting for appointments and waiting for the drugs to take effect is par for the course I'm afraid. You sound like a very reasonable person and I imagine you would manage to keep up the pressure for an earlier appointment without offending anyone. Being politely assertive is definitely the way to go for anyone who thinks they may have inflammatory arthritis. Good luck.
Hi postle2, thanks for your kind reply. I do have funny looking nail and psoriasis and I did tell the GP. The GP also considered psoriatic arthritis when sending me for X-ray. But after X-ray he said there is nothing wrong, or let's say there is nothing wrong can be detected so far. That is why I am desprete for further tests, which can tell me more.
My fingers were making me very uncomfortable during last weekend, also wrists. 2 of my fingers looked like swelling at the joints but I felt like the whole finger was very tight. The funny thing is that I wasn't in good mood since last night so I didn't have dinner, I didn't have breakfast and lunch today, and now the fingers are absolutely much better... Is this because of fasting?
My wife and I did talk about to try to have baby now but we believe we need to wait at least 3 months since I quit smoking/drinking, which I did 4 weeks ago. Should have done it earlier....
To offend people is not a way to solve any problems. I think if I have to wait too long I will go for private or abroad to get this sorted... Btw, I am not too sure how much will it cost to go to private consultant? Plus tests and scanning etc. How does it work? Will the private consultant then refer me back to NHS?
Hi. I think the fact that you have psoriasis and 'funny looking nails' is very likely to make a rheumatologist strongly consider PsA as a diagnosis. PsA tends to be diagnosed by what the rheumatologist can see and what the patient tells them rather than by blood tests or x-rays etc. An x-ray will only show damage to joints and with luck, whether you have PsA, RA or something else, you will not have sustained any detectable joint damage as yet.
Getting this sorted will probably require ongoing, consistent care so a one-off trip abroad probably wouldn't help that much. Private consultations usually cost under £200, you can phone a private hospital to enquire about costs. And again, if you can find an excellent rheumatologist, he or she might well be able to shed a lot of light on what is wrong mainly by examining you and talking to you. Sometimes people get a private appointment with the same rheumatologist they are waiting to see on the NHS, so if you know who you're being referred to this might be a good option and would help with continuity.
I don't know if fasting made you feel better, but I do know that inflammatory arthritis can be incredibly variable from one day to another. It's so good that you've given up smoking and drinking, a lot of us feel that a healthy lifestyle really, really helps.
In your shoes I'd get a private appointment and also ask my GP about how long referral is going to take, they should be able to give you a good idea. And I'd also check out the rheumatologists online profile, it can give you some idea of what they are like.
Hi postle2, just an update. I have tested RF and CCP twice in the last two weeks and both are negative. I am now more considering PsA as you suggested. I am going to see physiological next Saturday, I believe he or she will be able to assist or provide a referral to rheumatologist as my GP refused again to refer me to rheumy.
I am thinking to call Bath but not too sure how does it work as I have never done it before, can you give me some advice. Please.
Not sure if a single appointment can make the diagnosis? If so are they able to put me on NHS treatment immediately? Or do I have to wait for GP's referral? Can I ask treatment from Bath? If so, Privately or NHS?
I now understand that a one off going abroad isn't an option unless this is an reactive arthritis or just something temporarily making me feel not right.
I explained that my friend was considering a private consultation re. possible PsA and they then put me through to their PsA consultant's secretary who was really helpful in terms of outlining cost etc.
I am not entirely sure about all the things you ask but I think there's a good chance a phone call to the hospital might provide answers to some of them at least. I think it is not all unusual, unfortunately, for people to suspect they may have PsA and then to have great difficulty getting a GP referral, let alone a diagnosis. And my distinct impression is that the centres of excellence know this all too well and will do their best to put you on the right path or at least outline the way forward whether you have PsA or not. I do know that PsA patients often are diagnosed at their first appointment with a good rheumatologist.
Sounds like you've been busy getting to grips with the situation. Give the hospital a ring, at the very least you'll find out a little bit more about possible options. Good luck & keep us posted!
Hi thanks for the reply, may I ask about your treatment and how is it going? I would like to do some homework to get ready for it. I am still hoping there is a way out.
I've been googling a lot, including medicine option, diet, even Dead Sea treatment... I believe most people have PsA had been through all these.
I have psoriasis for year and been able to keep it at bay in the last couple of years without taking any oral medicines. So I am hoping there must be possibilities to do the same to PsA, although it flared already.
At least this thought can keep me looking at the bright side!
By the time my symptoms were recognised as meriting a referral to rheumatology I was really very ill - barely able to walk, unable to stay awake for more than a few hours, rapid weight loss etc. etc. Consequently I just wanted drugs! I've always been health conscious in terms of eating well & exercising regularly, and never did like taking drugs but I was well past the point of considering complementary therapies or lifestyle changes as sufficient in any way.
I was started on Methotrexate plus a short course of steroids to tide me over while the Mtx took effect, it's a slow build with that one. Later tried Sulfasalazine, then Leflunomide. And then Humira plus Mtx which is the combination I'm on now. Humira has worked very well. I have the occasional flare and a fair few 'bad days' but mostly I'm now active, have quite a lot of energy and feel fitter than I have done for many a year. I think the thing I appreciate most is that general feeling of 'wellness', of feeling fresh & alert so often. When you've felt absolutely grim for ages that state of being is blissful.
The trouble with PsA, as is true for RA, is that it's a destructive disease and some of the destruction can, I believe, happen insidiously even when someone has little pain and few obvious symptoms. For me a really good, varied diet and exercise are essential add-ons to help manage the disease and also to help my body tolerate the drugs. I personally don't see any evidence that complementary approaches can control the disease, and the fact that it does naturally wax and wane makes it difficult for any one individual to test out dietary changes etc. for themselves. However I do suspect that an unhealthy lifestyle can make the disease worse.
I think the key thing is to get a diagnosis that you are confident in and take it from there, going with whatever treatments you personally feel happy with. Incidentally, do you see a dermatologist for your psoriasis? Dermatologists are required (possibly just 'advised') to keep their eyes peeled for signs of PsA in their psoriasis patients and to refer anyone showing signs of PsA to a rheumatologist. So this could be a route for referral. If you knock on several doors at once then one of them is likely to open!
A Private consultation will be quite expensive......to some extent it depends where you are. London is very expensive.An initial examination plus blood tests could easily cost £500+.
If you know the name of a rheumatologist you would like to see, telephone his Private Practice secretary , explain what you need & she will be able to give you an estimate of the cost.
Word of mouth is a good way.....why don't you & your wife ask around amongst friends & collapeagues & see if you can get a name?
You can also ask your GP for a referral to a rheumatologist in your local area.
However- to see an NHS rheumatology consultant the waiting list seems to be long wherever you are in the country....17 weeks seems about average according to the NHS Website.
I have found on several websites saying that the first three months after symptoms turned up is called the opportunity window, which is the best chance to get treatment and avoid futher damages..
I don't know about three months- but if you do have RA the sooner you get on to treatment the better. I was diagnosed in1999 & have progressed through various treatments & I have very little joint damage.
As a young man anticipating starting a family do persevere in seeking a diagnosis....if you do have RA the sooner you get prescribed medication the better - but as has been mentioned most RA drugs are contraindicated for both men & women seeking to get pregnant.
Do you have any medical insurance as they can help you get referrals etc. Also as your feet are a problem ask your GP to refer you to a podiatrist to assess what is going on and they can refer on to orthotics who can get specific insoles made for you. My insoles are soft and have a dip for my big toe joints so that there is less pressure on them and it has helped me greatly with walking and standing.
Also, as you have inflammation be particular with your dental care regime to stop gum inflammation becoming an issue. Also see your dentist about the jaw pain as they may have an insight for what is going on for you. Drink loads of water. Eat as 'clean' and healthy as possible by reducing refined sugars, gluten and dairy (except plain yogurt as it has good gut bacteria in.... especially organic ones like yeovalley - they are often on offer in one super market or the other so are then reasonably priced). I find potatoes, tomatoes and chilli peppers aggravate my RA so I avoid them. Loads of rest of course and try to find something positive to focus your mind on (mindfulness meditation helps me with my depression and there are loads of tracks available online.... the app Omvana has some good free ones on it).
None of this will 'cure' you alas but it may take the edge off whilst you battle on trying to get definite answers.
Hi Ali, thanks for the useful information you give, I have them noted, and downloading the app now.
I found it is very difficult to avoid having gluten? What should I have for lunch when at work.. I had only an apple today and feel better now at 8pm, is this kind of confirmation of RA? As I heard that fasting might be helpful for pain and inflammations from RA.
Leaving out gluten in your diet can only have a good effect, often does in RA. Fasting helps only when you fast but does not affect the progression of the disease long term and when you stop fasting the pain comes back.I hope you will get help soon but in the mean time Naproxen usually works quite well in the beginning, the dose of 250mg a day may be too small? I would ask your GP about adjusting the dayly dose.
There is deffinately something wrong that should be examined properly but there is no point suffering if anti- inflammatories help. When my symptoms started, much like yours I was perscribed 500mg Naproxen morning an night for three weeks. All my symptoms disappeared and after stopping the med it took a very long time for the symptoms to come back. True however that we are all different and our diseases are in different stages what helps for one may not help the other. Good luck
At the time I was seeing a functional medicine doctor with extensive knowledge of body biochemistry and of how vitamines and supplements support the immune- system. I had a thorough lab analysis of my blood that gave me a map of what was needed to support my immune system. There was a huge amount of supplements that I took for a long time but eventually stopped taking since I had no symptoms. It may be that this was one of the reasons that my RA broke out after two years. Now I am controlling my RA with AIP diet, LDN+ supplements. No RA meds ,yet anyways. So my situation was a bit different from yours but what I have understood the effect of nasids normally wears off in 2-3 months.
Hello - can you share what an AIP diet and LDN mean. Also what supplements do you take that seem to help?
I am still awaiting a proper diagnosis - this weekend was in tears as just couldn't walk! Had to resort to taking Naxopren - I would rather look into other ways that could help.
AIP is the autoimmune paleo diet. Very restricted elimination diet where you try to eliminate all foods that often trigger inflammation. You should however start by eliminating gluten, sugar and dairy from your food (all of it!) after a month you should feel a difference, if it isn't enough then you go to the next step. Google AIP and you get good instructions😊
Thank you so much. Feeling teary as told by the rheumatologist I have a positive RA score 😕 My blood count was 200 when it should be less than 20. That scares me as he wouldn't confirm if this means I have it severe. Still trying to get it to sink in. I have always been healthy and now this really sucks .... thank you for this info I will definitely try everything to help what lies ahead.
I am sorry that you doctor hasn't helped you to understand what your situation is and what the blood work has told him. Perhaps your GP can help you? I don't exactly know what you mean by your bloodcount beeing 200? Usually what the doctor is looking for in your blood is CRP which tells you about the ammount of inflammation. The RF and CCP antibodies that are usually elevated in RA, most importantly the CCP. The SED rate is also an important factor in diagnosis. And of course your joint symptoms and pain.
Do not panic the tests take time and around here an MRI is very unlikely for RA. Give your GP a chance and yes you can pay here its about £190 for a private consultation plus tests. But I would not do that in panic wait to see what your GP does next. An MRI is not magic it may be that you simply need more tests and so do not get uptight but keep the communication going with your GP as they are vital in our lives. If you need to ask to see another GP in your practice and keep a diary of your symptoms to show him or her. I hope that helps. And avoid any sort of unusual diet or fasting without medical advice as it just might be harmful as fatigue can be caused by poor nutrition, wait to see what your GP advises.
Sorry it's not a definite answer of RA but more a confirmation that your body is struggling in some way. And yes fasting has proven a positive way of easing inflammation but go stead as you need energy for work.
Salad is a way of avoiding gluten but it's not very warming. Do you have access to a microwave at work cos home made soups are good. Breakfast of poached egg on bacon with mushrooms/beans but no toast is a goer (the trick with baked beans is to drain off most of the juice as this is where the sugar and tomato is held... the beans themselves are very healthy). Yoghurt and fruits is also a good breakfast or snack. Salad between two slices of turkey makes a good sandwich and avoids expensive gluten free bread buying. Rice based dishes are good and warming at this time of year. As are stews.
Poached eggs on a bed of lettuce is surprisingly tasty as is a hot drink made from Vecon, marmite or bovril (may have some gluten in so check the labels).
If you are able and want to drink switch from beer to cider but alcohol will encourage inflammation so moderation, moderation, moderation is the order of the day (are you still speaking to me now???)
Stewed fruits are in season and warming (add a hint of cinnamon and/or ginger if you like and nice with a dollop of yoghurt on top).
Turmeric is good for inflammation so sprinkle some powdered or finely chopped fresh into soups and stews (fresh will stain anything and everything yellow!).
Replace potatoes with sweet potatoes - they are great roasted in their skins as wedgies.
If you can stand it a sauna/steam room is good for shifting inflammation and toxins but drink even more water and go very steady with it.
All the best
Ali
I am serum negative Rheumatoid Arthritis. Mine started with hips being sore and stiff and then my feet and ankles, followed by my inner elbows and then my eyes. Somewhere in there, my back started to bother me, sore and stiff. I've had these same symptoms for about 14 years. A few weeks ago, things got out of hand. I felt so stiff, sore and tired that I called my Dr and asked for a steroid shot. Lots of blood was taken and a week later, Dr. called and said I was starting Humira. I feel better but don't know if it's the shot still working or Humira. Also on methotrexate. I said all that to say, as many times as it takes, that you are unwell. I pray you feel better soon. Take care, it will get better!
Reading this takes me back five years as it was like you were describing my start on this journey.
It took my gp and rheumy team 4 years to diagnose ra because my bloods would come back normal every time. I had every test going because they didn't know what was wrong ! In the end I gave up with the medical teams and struggled on with my job and a life in chronic pain for about 18 months because they couldn't do anything.
During that time I was also on naproxen and was given short courses of prednisone which got me through some of the worst times. I finally went back because I couldn't cope anymore and last march my blood tested positive for ra.
Don't give up or feel like there's nothing that can be done. Everyone is different and if you can manage your symptoms with lifestyle changes and diet then that would be great.
I don't know if you've tried oral steroids yet but if you haven't then it may be worth while speaking to your gp. I know it's a short term fix but it's better than suffering until they find out what's wrong.
It was a long time! but I gave up on the medical help because they couldn't help without a diagnosis 😷. on the plus side I didn't have any damage to my joints and I'm on sulfalazine now which is working wonders x
Don't give up and hopefully they will find a solution for you too.
Ra isn't the same set of symptoms for everyone so it is unfortunately for some hard to diagnose until the rf pops up on your tests. for years mine was just high inflammatory markers which could have been anything.
It's really too bad that patients often have to wait with proper treatment until a fullblown disease breaks out. The latest research on when meds have the best effect tell us that the earlier you start the better chance the meds work in the beginning. The same can be said about alternative treatment strategies especially dietary modifications like AIP ( autoimmune paleo diet).
Hi there and welcome to the forum, i have read your post and the replies, i really dont think i can add anything more to what has been said but i hope it has given you a good idea of the hope that the wonderful people here will give you if you need us (and we all hope you dont), i hope you get some response from your medical advice soon.
Hi, welcome to this group. I'm sorry that you are having such a tough time. I was fortunate to be diagnosed this time last year with inflammatory arthritis even though my test results were sero negative.
I had my annual checkup last week and the consultant is sure I am developing or already have Sjorgen's even though I tested negative for that too but as he said in the letter to my GP I had tested negative for other things too. So even testing negative shouldn't rule things out if the doctors look at your other symptoms.
When I went to the doctor last year with painful hands, thumb joints, fingers, I couldn't hold things or pull plugs from their sockets etc I also had a lot of muscle pain and couldn't do anything in the morning - lots of the symptoms you have, my doctor said he was referring me on our hospital' fast track system. I said I didn't have distorted finger joints and he told me that if patients were treated quickly and early there was no need for that to happen.
You sound very poorly. You have had lots of good advice here. I would definitely take photos of any swelling and also any psoriasis. When I saw the consultant first they kept asking if I had 'any rashes' - I imagine your psoriasis would count as a rash. I'm not an expert but I really think you should be treated quickly.
Are you in the U.K.? Could you pay to see someone privately?
Hi there, thanks for reply, yes I am in the Uk. Have been working in London for 7 years as a full time employee in construction. I think I will go to see my GP again this week and ask about referral, as I haven't received anything yet.
Did you go for the hospital fast track? Are you on medications? I hope you have got it sorted.
dahongbudong, while obviously I don't have any medical knowledge, I am just a patient, I honestly think that the fact that you have psoriasis may be a significant indicator of Psoriatic Arthritis. There are two centres of excellence for Psoriatic Arthritis in the UK, one is in Leeds and the other is the Bath Royal National Hospital for Rheumatic Diseases. I know that private consultations at the Bath hospital come in at under £200 (or at least they did last time I contacted them about a year ago). Their receptionists are extremely helpful, you'd get good info. from a phone call without needing to make any commitment.
The centres of excellence have a little more clout than other hospitals and so can help get the ball rolling with treatment if a diagnosis is made, even if the appointment is a one-off private one, or so I believe. Everything I know about the Bath hospital suggests that it is not a case of 'Psoriatic Arthritis or bust'! So therefore while PsA is their specialism, I am sure they would also be a good bet for diagnosing other forms of inflammatory arthritis too.
Hi welcome to the group . Personally I would go back to the GP and get more blood tests done. I could have low inflammation one day and high a week later! You must be your own advocate and push for a Rheumy appointment and remind the GP there is a what they call 12 week window for best practice for ra treatment. Main diagnoses is on clinical symptoms, blood test, ultrasound scans and X-rays . Insist on s Rheumy referral and then phone the Rheumy secretary and tell them you will be available for cancellations ( if you can)
If you haven't found the NRAS website already do read it . It has so many helpful points in it and their help line is fantastic.
Good luck but you will find you need to do the pushing with RA !
Hi thanks. Just received a phone call from a Physiotherapist, apparently I have been referred to a Physiotherapist and an appointment is booked for early December. Should I wait to see the Physiotherapist or should I go to GP and ask for referral to Rheumatologist?
Pod take photos of any red or swollen areas that you can and keep a pain diary, then you have some evidence . I'm serious negative ( no rheumatoid factor) but my inflammation is high but I still get RA treatment just the same x
Hello! It took me years to get a formal diagnosis of RA but since then the treatments I have had have worked extremely well. I am on Methotrexate which takes a very, very long time to work but when it does you will know it. If it doesn't work don't worry. There are plenty of other drugs that you can try. On the whole I would say that you need to address your pain on several fronts. You might need special exercises; inserts for your shoes; surgery on your toes; steroid jabs; and different medications to control the RA. Try, if possible, to have a good supply of painkillers to hand as they are essential. However, you will need a small daily dose of lactulose to prevent constipation. I'm still working and wouldn't have it any other way but you'll need to wake up about an hour earlier than usual to mobilise. Have your first cup of tea/chocolate/ coffee in bed whilst you wiggle your toes etc. Then, have a hot bath/shower to finish the loosening-up process. Rest when you need to and don't forget that you have a serious, painful condition so go easy on yourself. I''m seeing one of the registrars at Guy's on Thursday to get steroid jabs in my feet and ankles. The injections help a lot but it's all the treatments and activities taken together that I am finding works best. Good luck and do keep using the group. I have found that the posts are full of very helpful information. Warm regards, Jay-bird
Thanks for advice. I have been using Dovonex for almost 6 years but only small area, and just stopped three months ago. I am not too sure if stopping use this is something can cause pain joints...
Dahongbudong, I have psoriatic arthritis and I am a friend of postle2. PsA is a very strange disease. Here are a couple of things that I think you need to get your head around:
Psoriasis and Psoriatic Arthritis occur in the same person, but they are not the same disease. So treating (or stopping treating) your skin with dovonex doesn't change your arthritis. There are some medications that you can take, though, which will help both your skin disease and PsA.
You can have very mild psoriasis, but very severe Psoriatic Arthritis. (This was my case: my skin disease was only diagnosed after my arthritis.) Very occasionally, people get Psoriatic Arthritis without any sign of skin problems. Some of those people have someone in their family with Psoriasis.
Psoriatic Arthritis won't show on X-rays until there is joint damage. You want to treat your disease before you get to the damage stage. An MRI can show things like inflammation and swelling.
Some people think that PsA is a mild and relatively harmless disease, and sometimes it is. It can also be severe and destructive. In my case, it destroyed my hips, knees and feet. Fortunately, I was already retired and did not need to support a family.
Diet and complementary therapies can reduce your symptoms and make you feel better, but there is no proof that they can stop the destruction of the disease. The only proven therapies that can stop disease damage are ones prescribed by a rheumatologist.
Psoriatic Arthritis can be a very slippery fish to catch. In more than half of PsA patients, their blood work appears to be normal. Mine was, while at the same time my joints were being trashed.
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