NRAS
21,745 members25,384 posts

Grief stricken and big flare !

I am full flare at the moment (housebound), I was diagnosed with RA in 2011 at Northampton Rheumatology Clinic, but moved to South Wales in 2016 and now attending RA clinic in Bridgend. My problem is my medication isn't covering my condition, I am on 20mg Methotrexate injection once a week with no other back up drugs ? After many years of caring for my husband he died 5 months ago. I am naturally upset, anxious and stressed, hence this big flare up, no doubt. My problem is that because I don't have huge swelling of my joints during a flare the doctor Is questioning whether I have actually got RA. She has ordered a full body scan, which is good, but the wait is around 8 weeks !! In the meantime my medication is not helping to control this present flare which is in all of my toes, both ankles, both wrists, all of my fingers and both knees. My medication will not be changed until they have the results of the scan !! Apart from having very little swelling, which I would like to know if anyone else is like me ? I am worried about how much permanent damage to my joints I am going to be left with through lack of decision to find a better form of treatment for me. Though I have asked for a steroid injection to help whilst waiting for a scan date I have been told that they need my inflammation to show up on the scan, which I can understand. I really don't need all this upset on top of the grief I am going through after losing my soul mate husband. Can anyone understand or have any solutions to help me through this difficult time in my life ? Regards June

26 Replies
oldestnewest

My sincere condolences June, it's a difficult time to say the least but with RD even more so. It's little surprise you're in flare unfortunately, times of stress typically bring them on. Not helpful I know but you have my sympathy.

It sounds as though your Rheumy relies on blood tests to determine how well controlled you are, or not, which isn't helpful when you don't always show inflammation in your bloods, I'm similar so do understand your frustration. To consider that you may not have RD after all this time does seem a little odd though. It's a positive that she ordered the scan, it shows she's not disproving it, but to say no change in meds when you're obviously in flare isn't helping. I suppose as you say she wants to see just what's going on inflammation-wise as it is now but 8 weeks seems an awfully long way away when you're mid flare. Would an ultrasound be considered do you think?

If it helps, I was off my MTX for 3 months, mix up Rheumy-wise when I returned to the UK from living in Spain, & I didn't incur any damage. I know we're each different so it may not be the case for everyone but it's my experience.

I'm sorry I'm not much help. Keep your family & friends close, accept any help they offer you & of course we will always be here for you to rant at or just talk away with, anything we can do to help we will. x

2 likes
Reply

Thank you, for your reply nomoreheels. It’s a long time since I was last using this site !! I was very involved with looking after my husband for the last years and just collapsed into my armchair at the end of the day and was happy to do absolutely nothing. The biggest problem I have is not being with my original RA clinic in Northampton where I was diagnosed and with doctors and staff who knew me. No records have followed me here to Wales unfortunately. But, my Rheumatology doctor here is apparently going to try to talk to the doctor at the Northampton Clinic, so at least that’s positive. I think what has upset me the most (apart from the inevitability of further damage to my joints, ) is the fact that they are questioning my own integrity and the original diagnosis !! The disbelief just because I don’t have a lot of outward signs of swelling !!!! Don’t get me wrong, how nice it would be, not to have rheumatoid arthritis 🌝🌝🌝🌝🌝. June xx

Reply

Hi , me again.

I was put in a situation maybe similar to yours last year. I got really sick with the flu or something like that, and I decided to go to a GP so he can see what’s going on with my over all health. It seemed to me a very responsible grown up thing to do since I’ve only been following up with a rheumatologist for so long, I felt I needed to also have a proper check up on everything else. This GP was a very well recommended doctor, with at least 30 years of experience, etc.. so I was really happy to go and see him as I felt I would be in good hands.

During my consultation I informed him I had RA but was recently really ill and I wanted to get a hold on my overall health. He then did a standard basic exam and proceeded to tell me how in his professional opinion I did not have RA , and that even my recents unwellness was due to depression.

I’ll give u moment to laugh.... are you laughing... done?!.... ok.

He did not know a First thing about me, or any history other than I’ve told him and mind you I told him about all of the RA symptoms and meds I had. He said that since my joints were not inflamed and I no longer had morning stiffness I cannot possibly have RA.

You would think I’d be happy, right? Since I got diagnosed I always wished I was healthy and pain free and off meds but I could not be happy , because A) I realized this man was an idiot B) I was now depressed because a very reputable doctor just classified me as depressed C) because I didn’t find out why I got so sick with the flu D) I could not believe what I was hearing!

I went home and tried to rationalize, my rheumatologist was out of the country so I couldn’t go and discuss things with him. I knew the GP was wrong , I know , I’ve seen my inflammation on imaging scans and I’m in pain and I know what this disease is.... but thereafter those that say that all wellness starts in the mind. So perhaps , maybe, who knows, I was depressed ( I had RA so it’s totally acceptable for a person to get depressed because of it) , and this doctor has seen millions of patients in his career who am I to question him???

So, I decided to taper off my meds and stop taking them all together. I would tell myself constantly affirmations how I’m happy and healthy.... and yeah.... for a while nothing happened and I wasn’t in any much more pain than usual, but oh boy about two months later my pain came backing worse than before and now I was experiencing full blown morning stiffness like never before.

So , if you have a diagnosis stick with it!!!!!!!!! And never ever stop taking your meds. If you are not satisfied with the care you are given look elsewhere. You know yourself now and before and during your treatment. You know how you feel. Don’t allow anyone to tell you it’s all in your head.

3 likes
Reply

My Dr. wanted md to get situated to another specialist, as mine left the country.Anyways , when I went to the appointment i said i was in remission and would be able to dohis exercises. Well, he said i have to believe that you have never had ra, and wanted me to go off my meds! Hey, thats egat i wanted to hear. Like you was fine at first.Then bam!! Worse ghen ever. I was seronegative before this, seropositve.Thats true, dont let anyone say its all in uouf head! :)

Reply

My condolences dear. I have serro negative RA so my inflammation markers don’t show up in blood tests! But, a Rheumatologist diagnoses by many different methods including history of symptoms, physical exam and X-rays or MRI! Although it doesn’t physically show on surface that I have inflammation the X-rays of my hands told a big tale of what’s going on and also during the physical exam the doctor could feel the inflamed joints when he touched them even though they didn’t hurt me at the time!

Maybe you should go see another specialist who knows how to diagnose using all possible methods . It is very u fortunate your have to wait all that long for your scans to get back. I live in Egypt and although our system here is not perfect we get our scans back the same day or maybe the next day Same thing for blood work... also If a patient is in agony it’s standard to prescribe steroids to control the flare up until the meds kick In, I really don’t understand why they won’t give it to you.

On another note, I recently read that the onset of pain and extra morning stiffness isn’t a direct indication or cause of bone erosion or degeneration, that takes time if the condition is left untreated.

I take Celebrex daily and it helps control the inflammation it’s non steroidal so it may help in the mean time. I am very sorry for your loss , please take care of your self.😘

1 like
Reply

Hi izabella81, thank you for your reply and all information. When I was first diagnosed the doctor had an XRay done and he did an ultrascan on my hands on my very first appointment at the clinic. He told me that the scan showed that there was no soft tissue left between my joints and he said it was a sure sign of RA. But, the lack of swelling is this new doctor’s question !! I do get some swelling, but my GP said the swelling is not always visible and more likely to be in the joint capsule itself. This situation for me is just one of life’s irritations, but I am a bit over sensitive at the moment, for obvious reasons. My main concern is the possibility of further damage to any of my joints which will more than likely be permanent and something else to affect my everyday life !! 😖

Reply

As you were caring for your OH it must have left a very large hole in your life. I lost my OH unexpectedly 6 months ago at aged 50 and it has totally changed my life as I knew it. Do you have a rheumy nurse helpline at your hospital you can ring and talk things over with them - sometimes they are more understanding. May also be worth a chat with your GP as they may be able to direct you towards some support for yourself. x

2 likes
Reply

It must have been a terrible shock to lose your OH so suddenly and at the age of just 50. My OH was 70, the same age as me and he had been ill for many years. He was diabetic and on dialysis for the last 7 years of his life. We had been married for 32 years and were soul mates, he was such a lovely man, Anyway, life is totally changed forever as you say. Getting used to living alone is a challenge, and finding other things in life to concentrate on is going to be a challenge for me, after all the years of being so busy looking after him. But, I'm determined to pick up some interests and hobbies which I haven't had time for, once I get over this RA flare !!! Take care, and would love to know how you are doing in time to come. X

2 likes
Reply

So sorry to hear of your loss Farm. Sincere condolences and big hugs to you. Great advice. xx

Reply

So very sorry to hear of your loss; my thoughts are with you.

Marie

1 like
Reply

Thank you so much for your kind thoughts. June x

Reply

Hi I lost my wee mammy just after Christmas and like yourself have ended up with a big flare. I'm a carer for my husband too and now supporting my dad. I think the added stress on topof everything caused the flare.

I'm trying to just hold it together and gently work through. Wanted to send you a wee gentle ((hug)) M x

1 like
Reply

Ahh bless you, I'm sorry to hear of your wee mammy's passing. You must be kept very busy looking after both your husband and dad ! Like you, the stress and anxiety has got a lot to do with my flare. You take care of yourself wee lass and I'm sending you a wee gentle hug xx in return. June x

Reply

So very sorry to hear what you are going through. I had similar to you not much swelling but sort of deformed knuckles and the drift of my fingers. Had ultra sound scans and MRI and the senovial fluid showed I had RA. I am on Methotrexate injections. We live in Shropshire and are thinking of moving to S Wales as two of my daughters live there, what are the hospitals like for RA. At the moment I am At the RJ &AH in Oswestry world famous hospital with an amazing RA centre. I hope things improve and you get you scans quickly.

Reply

Hello Lyneal, Thank You for your reply. Yes I too have deformed knuckles and bent fingers ! I too am on Methotrexate injections, but it isn't working for me. My flare is stress related I am sure ( just like Marie66, and the RA doctor seems to agree. Some people swell a lot, but I only have mild swelling. The part of Wales where I live is lovely, not far from Cardiff, but I attend the Princess of Wales Hospital in Bridgend. The staff are lovely but because I was diagnosed in England and my notes have not been transferred to Wales, they rely on me to tell them any details of my treatment in Northamptonshire and I can't remember everything ! Wales is lovely and I have no regrets about moving here to be near our son, but I would think that you will really miss your amazing RA Centre, but don't let this put you off, because it's also great living near to family. I had a call from RA clinic today, they have spoken to the scan staff and they will offer me the first cancellation they have. So it's a waiting game just now. Xxx

Reply

Hello again, thank you so much for the information re hospital sounds like good Rhumy care. If we do decide to move it will be to the Vale of Glamorgan, so it’s so good to hear what facilities are like for hospitals. Do hope you are a little better and must be so hard to deal with the loss of your Husband aswell, it must have been all the stress that brought on your flare. Still awaiting my cortisone injection but have been having hydro therapy in the hospital pool it’s amazing water at a constant 35 degrees and it has helped. Do take care and look after yourself, because life is so hard, especially what you have been through.

Reply

Hi, I’m just outside Cardiff and the main hospital here is University Hospital of Wales and they have a great Rheumy dept with a day unit as well and a dedicated line to the rheumy nurses where you leave a message and they get back to you quickly to help.. so if you move to S Wales there is a good chance you’ll be under UHW..

Reply

Hello JayneR, Well, well, well....... I am here in Wales !! I love in Llantwit Major. I know the University Hospital almost like the back of my hand. My husband most of 2017 in the hospital and that is where he finally passed away last November.

I am presently with the Princess of Wales Hospital in Bridgend. I had no idea that there was a good Rheumatology clinic there, but thinking about it, of course they would have the most up to date clinic facilities, wouldn't they !!

Ian and I moved here from Northamptonshire in May 2016. Our son suggested the move so that he and family could support me with Ian's care.

Well, I have a scan booked for 8th of May with a follow up appointment at the clinic a week after that. Someone else in this thread of messages suggested I get a second opinion, which I have decided I will do. So, I will perhaps ask my GP to refer me to The Heath.

Thank you for your reply and the good advice. Take care yourself, June x

Reply

Lovely to hear Wales is good for you, we are still thinking about the big move to be nearer to our Daughters. So sorry to hear about the loss of your Husband that must be so hard to bear. I am suffering from hip bursitis at the moment been brought on through RA so very painful to walk or sleep. Hope to have a cortisone injection soon. We all do have to go through horrid flare ups, hope yours get better soon.

1 like
Reply

Hello Lyneal, Thank you for your reply. I am sorry to hear about your suffering with hip bursitis at the moment. It sounds like you are as house bound as I am, at the moment. It's awful to lose our usual mobility let alone cope with the pain and discomfort. I used to use this valuable site very regularly during the first couple of years after being diagnosed with RA. It helped me to understand more about the condition and I enjoyed the community chatter and friendship. Then as my time went on I got more taken up with looking after my husband's needs and I was too tired to do anything much at the end of each day. But, here I am again benefiting from the experiences of others, like you, and having conversations. I do hope you get your cortisone injection soon. There is nothing worse than being kept awake at night with pain. Take care of yourself. Xx

Reply

Ask your GP about Zomorph and Oromorph which works for me . I also use massage oil Élan Veda which I find reduces the pain. Think also about a TENS machine.

Reply

Hi Beegee, thank you for the advice, but I am surprised that you suggested Oromorph ! My mother was on it just before she died and it is strong stuff. Mind you, I wouldn’t mind being a bit spaced out just now.

Reply

Hi Petal, I remember you, lovely lady, from a few years ago. I'm so very sorry for your loss and no surprise you have flared and feel awful. I am frustrated for you that you can't get your body scan sooner and also an injection for the wrist as even though it would help the pain if there's no inflammation the rheumys don't tend to do them. Gosh I wish your results and notes had been sent on . .that's surely not so hard to transfer? Grr. I would suggest try submerging the hand/wrist in bowl of (not too burning) hot water with a cup of Epsom salts in it or a wax hand bath. Can your rheumy refer you to the physio for this although it will probably take as long as the scan to get a physio appointment. Also what about some Deep Freeze spray (£4 a can at Tesco) on the wrist though you will have to keep it off your fingers for eating and preparing food but this spray has done wonders for my knees if I have had to walk anywhere of distance. I try not to use it all the time. Have you got a wrist support or using an elasticated support as it could help not spraining or hurting your wrist whilst doing things round the house etc.

Frustrating to be told they don't think you have RA but whatever it is needs investigating and tbh my old GP told me I didn't have RA when I staggered in swollen (before RA diagnosis and the bloods showing it. I had 9 months of no show RA in my bloods even though I had it with a vengeance!) with a wide pair of trainers unlaced and an office suit on! He said just keep wearing the trainers if your feet swell in the heat!!!! They will help. I told him B*gger Off and got up and left! It is the last thing we need to be meddled about. Or patronised, as I was in agony. Every part of me was flashing with pain, so don't be fobbed off. I would ask re an ultrasound too. I am going to soon for my knees as I have never had one but have had a fact body scan/DEXA

Agree with what many others have said with great advice and especially Farm who has suggested some support to talk you and help you through. An impartial ear can often be the answer. I hope you have friends and family closeby and can be out and about over summer. You have many friends here. Huge hugs.

Julie xx

Reply

Oh Neonkitty, how nice it is to hear from you again after all this time :) Well, there are always good things that come out of bad ! I lost my lovely man, but I do have all the time in the world to do the things I enjoy now, and Ian would be pleased about that. So, Thank you for your lovely and informative message. Although my hands and wrists are painful, the worst part is my feet, goes and ankles particular!y, and I already have days damaged ankles and can't walk very far. Thank heavens for my scooter !! I spoke to a doctor in my GP practice todaya, he is a Mr because he's an ex Orthopaedic Surgeon and though my Rheumy doctor said that she is sending me for a full body scan, in the letter to the practice she said just a hand and wrists scan ? Well that's no good to me !! My feet have never been looked at let alone examined or scanned !! (a very common situation from what I have gathered on this site). So, I have been very lucky in the support I have received from The Royal Marine Association, Ian was a Marine for many years before I met him. They supported Ian up to his death with advice, because both of his legs were amputated above the knee, poor man. But, they reimbursed all of my parking and petrol costs for the whole year when he was mostly in hospital. But to get to my point they are offering to pay for my scan privately, I am blessed truely. But, I have to try and get the scan amended so that my feet are included, because otherwise it's a complete waist of time ! I had a scan done on my hands a few years ago and the Rheumy Doctor told me that it showed no soft tissue left in the finger joints , hence confirmation of RA. So, my battle goes on. Ha ha ha

You have to laugh at the trials and tribulations we RA sufferers have to go through at times, or we will all go mad !! Take care of yourself Julie, and I will give the deep freeze spray a try. Thankyou. Lots of hugs xxx

Reply

So very sorry...hugs & healing to you! ❤️🙏🏼

Reply

I thank everyone who has left replies for me. Thank you for your kind understanding of my loss, and for making me feel welcomed back amongst you all. I think what I have picked up from all your replies is that although we all have the same basic condition, there are many variations and depths to the amount of swelling, deformity, pain and inflammation we each have. Some of us swell a lot, some have very little swelling. It's a bit of a minefield to diagnose, I suppose. But, I bet there is one thing that affects us all in much the same way, and that is the pain we have to cope with. My word, it can be painful !!! And I haven't even touched on Overwhelming Fatigue !! Debilitating is my word for it. Thank you for bits of advice including products which can help with the pain.

Lots of hugs to all and take care. June xxx

1 like
Reply

You may also like...