I first wrote a blog on this site last year in the summer and haven't been back on until now. This is due to mixed information I have received from consultants so i haven't known what's been going on-it has been a living hell. For the past year I have been told I have arthritis, it's ra, been on prednisolone and mtx and hydroxychloriquine, only to be told to stop everything apart from hydroxychloriquine as it's fibromyalgia. Then I've seen another Ra consultant who said it definitely was arthritis and to carry on with hydroxychloriquine and would see me in 3 months time. The 3 months came, I was 1.5hours late going in and he said great news, your bloods are clear which is good news for the future as it's not ra or arthritis at all, after telling me it was at my last appointment, he just didn't know if it was ra. He told me to look at my diet without even asking about it-I'm size 10 eat lots of veg and fish, snack on raw almonds and drink 2litres of water a day. I asked him "do I look over weight and in unhealthy to you?" To which he replied "no". I then asked him why my knees and hip hurt so bad, in particular my left hip-he said it was because I had such long legs and because of my height, I'm 5ft 11 so I pity all people taller than me as they must be in agony more than me. He suggested I took up badminton and netball even though I couldn't walk properly. I then asked if I should carry on with the hydroxychloriquine to which he asked " who told you to carry on taking that" and said "you" so he told me to stop. I burst into tears, I've never experienced anything like it. Since the appointment 3 months ago, my hands and knees burn and my doc referred my to an orthopaedic who said I need hip arthroscopy do to having a labral tear and no cartilage. So glad I didn't attempt to play any sports!! My work have been extremely supportive and I'm looking at seeing a new consultant. Has anyone else experienced this kind of care and advice? xxx
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Loubylou1
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I'm so sorry to hear of your awful experience but not in the least surprised. I had a terrible time getting diagnosed and after a misdiagnosis ended up going private to see a different consultant. The whole process took about 6 months and I was in agony the whole time. So where does all this leave you now? It's brilliant news that you don't have RA but surely needing an arthroscopy can't be causing your hands to hurt and you still need answers.
Hi Paula, thank you for your reply. Sorry to hear you have had a tough time of it too, I'm glad you are now sorted. I think I will be going down the private route also. My thoughts exactly....My in agony with my hands, knees and feet and have been for nearly 2 years. My hands and knees burn and are extremely stiff which tells me there is a problem and I've also had a steroid injection in my knee due to a cyst....but apparently there is nothing wrong.....even though I need a hip arthroscopy, My doc has put me on 1800mg a day of gabapentin for the pain which takes the edge off. I react to everything so this was the only thing I can take in place of anti-inflammatories. I also take 60mg of amitriptyline to get through the night filled with pain... It's proving a long slog to get answers!! Lou X
It's terrible that you have to consider going private for a diagnosis Lou but for me it was the best decision ever. It was honestly the worst 6 months of my life and I cried buckets with the pain. Keep bugging your GP until you get the help you need and deserve. Best of luck
Thank you for sharing your experience with me Paula, I will keep bugging them and go private. I hope your life is back on track now and the pain is under control. Best wishes, Lou x
Lol! Indeed Sylvi. I will keep going!! Thank you xxx
Jeez that is so shocking Lou, Gawd!!! I agree with what Sylvie has said, get a new rheumatologist.
There are so many people who have been suffering from ra for years before getting properly diagnosed. What do you think yourself from reading everything that you have found out about the conditions do you think you have ra. If you do, keep fighting to get properly diagnosed and get properly treated.
Hi, thank you for your reply. My doc has been really understanding and said that the problem is my bloods. I have all the signs and symptoms but because my last two blood tests came back normal they can't put me on anything-but I was taking hydroxychloriquine when my bloods were taken. Now i am no longer on anything but gabapentin for the pain i've gone back to square one and My hands burn all night, all morning, then is dies off and comes back with a vengeance in the evening. I'm very stiff in my hands and knees and the joints are tender to touch, but not swollen. Before all this I used to go to the gym, enjoy socialising but now after work I just go to bed, the fatigue is phenomenal! My physio thinks it is ra but I will keep pushing for answers-it is very draining though! It's a mystery!! X
If you were on hydroxy then inflammation might well have been reduced to normal levels - that's one of main things you want DMARDs like hydroxy to do. Like loads of people with RA I've never had any indicators of RA in my blood except for high inflammation (measured by ESR and CRP) and yes, some people don't even show that.
It worries me that maybe some doctors don't take that invisible monster fatigue seriously & much prefer things that can be seen & measured. I think if you have invisible symptoms then the way forward is determination plus repetition - if you keep repeating the same thing eventually someone will listen. x
If your bloods are always normal (including RF and ANA) then you could ask very firmly why they aren't also considering one of the forms of spondylarthritis or seronegative RA. You could also ask if your joint pain could be enthesitis (which would also point to spondyloarthritis).
If your GP hasn't heard the whole sorry story then perhaps that's where you should start just in case she or he doesn't realise quite how badly you've been given the run around. You could ask them for more blood tests to double check for inflammation etc. However it's possible to have inflammatory arthritis without inflammation or any other indicators showing up in blood tests. Perhaps you don't have an inflammatory condition, I hope not, but it certainly sounds as if you need a consultation with a good rheumatologist if only to exclude RA and other similar diseases more convincingly.
As I understand it the decision to go private is mainly up to you though one GP did try to persuade me not to see a private Rheumatologist at one point. What you can do is research private Rheumatologists in your area - ideally someone who also works in the NHS and would therefore be able to influence your NHS care from there onwards if necessary. It's possible that someone on this site may be able to recommend a consultant. And then basically just insist that your GP refers you. I've been told all sorts of odd things by doctors over the years and usually just accepted whatever they said but if you do have RA you need prompt treatment so you have to be pushy. Good luck.
Hi Luce, my gp has been very understanding and said it's because my bloods are normal that they can't put me back on mtx or something similar, so I'm mo 1800mg of gabapentin. Having said that, I wasn't aware that you can have ra and your bloods show a normal rf. I will most certainly keep pushing and i will do my research and push to see a decent consultant. Thank you for your help, it has given me the will to keep trying. Thank you Luce. Lou X
Oooh not nice ... So sorry you haven't had a good experience. Yup,I'm right there with Sylvi ... New rheumy and agree with Luce - get the support of your GP. Mine has been a Godsend.
HI Loubylou1, I have been in the same position myself it took 5 years to get them to treat me for RA , I am seronegative, the first rheumatologist would'nt even test me, it took me another 2 years of going to see my GP with lots of pain and feeling really ill every day , in that time I had 2 knee replacement and a hip replacement . I was told it was all osteo arthritis . then one day my GP rang and said she thought there was something going on and sent me for a second opinion. To cut a long long story short this one tested me and found damage and iinflammation.still no RA markers but the ultrasound and xrays showed damage . I was started on Hydroxychlorquine and methotrexate . I am still not well but I am so much better and feel I am on my way to getting things sorted.
I hope you get the help you need , it is horrible to live with feeling really ill and nobody will help you. All i can say is don't let doctors ignore you , we need to get the right medication . .....jilly x
Hi Jilly, thank you for your email but so sorry to hear what a terrible time you have had. I can't believe what you have had to endure and how long it has taken them to diagnose you. I'm happy for you that you feel you are on your way to getting things sorted and you feel better than you did. It has given me reassurance that I am not losing the plot and I have to fight and push to be heard!! I think because I look ok on the outside people don't take it seriously-with exception of my family and Work colleagues. I am extremely lucky to have their support but it has really helped me and spurred me on due to everyone on this site sharing their experiences and advice. I hope you stay on this path and feel better and better as the days go on. Thank you for sharing your experience with me. Lou x
Indeed Julie, the stress certainly doesn't help matters!!
Tomorrow is a new day and a new week where I say to myself.... i am not losing the plot, this is actually happening and push until I get answers and understand what is happening and why.
Thank you for responses, everyone has been so helpful, it really has given me a lift and I can only hope to do the same for you all one day
Dear Lou, I had the exact same experience as you. I actually queried my consultants diagnosis to the extent that he asked me to leave his surgery and find another consultant. I was devasted and couldn't walk for the pain all over my body. My GP actually advised my husband that it would take 6 months to get on another consultants list and advised us to take a private consultation at the local Nuffield. It was the best thing we have ever done. I saw an excellent RA consultant who also works NHS . The consultation lasted only half hour and I came away feeling like a weight had been lifted from me. She put me on anti tnf route immediateely through NHS and became my NHS consultant. That interview cost £225 which I know is a lot but it saved my sanity. We shouldn't have to do this but it worked for me and quickly - it took 3 weeks from booking appointment to go private, to being seen and refered for anti tnf. What ever you decide, good luck and I hope you get some answers soon. Sue x
I HAVE just spotted this blog, been unwell and preoccupied do forgive me.. yes I Sympathise and can speak from expereince? x
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