A moment to moan

Hi all

Sorry but I need to vent and moan to those people who know what I'm going through. I've been having a really rough time over the last several months. I've been having continual problems with my right knee for more or less 2 years with continual swelling that they can't seem to get on top of. I now have a Baker´s Cyst on the other knee and am struggling to get out and do anything because it's so painful. Even having my knee injected with a steroid (the one with the cyst) hasn´t relieved it. I can't have anything done to the other knee as it was only injected at the beginning of July and my rheumy wants to leave it 6 months before doing anything else. I have an appointment at the beginning of December but don't think I can wait that long. My life has been completely halted and turned upside down as I just don't feel like going anywhere due to being in so much pain when I walk. Even using crutches isn't much of an option as my hands are painful.

I'm off my anti-tnf as I'm trying for a baby but I know that it can take 6-12 months to conceive and I just don't know what to do. I want a baby so badly but not sure I can put myself through all of this pain much longer. I'm on 10mg of steroid which was from a reducing dose which started at 40mg. Even that didn't help my knees!!!

Has anyone else been in a similar situation with knee problems and if so can you offer any advice? I don't want to give up on trying for a baby as I had to wait 3 months of being off the ant-tnf before even trying. I feel like I've come so far and don't want this horrid illness to beat me. For the first time I have to admit I'm feeling very beaten down and totally fed up. At 33 years of age this just isn't right. It's not right at any age. If only they could find a cure.

12 Replies

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  • I would just like to say bless you, It must be so hard to except this rotten disease at your age, even worse when you are trying for a baby, I'm new to this site and disease, So I can't really comment and help With the problems you are having, All I can do is send you my best wishes and hope you get it sorted out soon

    ShirleyXx

  • Thank you for your kind words. Hopefully I will come out the other side, I have before!!!

  • Hi I feel so sorry for you today, when you are in pain and not getting any relief it is so tiring and waring. Its awful to feel so down and have the added pressure of keeping the drugs low so you can try for a baby, i know that feeling i tried for a long time to have mine and it can be very stressful. I tried very hard to keep positive as stress has been shown to make it longer to conceive. And now have three lovely kids.

    I do think though you need to phone the rheumy today though and get advice or even let them see you as if you are not mobile, in pain and suffering that is just not good. You do need to get the knees sorted dont you, they might be able to sort it or refer you to maybe someone else such as pain clinics ( i got acupuncture which really helped my mobility, not sure if they can do it in your circumstances?)

    Dont give up on your dreams of your family i say, ra is for life and you will learn to cope with both changes to your life from your illness and family, I'm sure your partner and family will say just sort yourself out for now, as they will hate seeing you in such pain, but maybe there is a point to that ,being pregnant is hard work sometimes, never mind not being able to get around. And you may find like me when its right , its right and the time will come.

    Do call the hospital or your GP and talk to them or the NRAS helpline, i found them great on bad days.

    And i sent you warm wishes and hugs, it isnt right i agree but you will get sorted and things will move on. love Axx ((()))

  • Thank you for your advice and kind words. I'm waiting for the hospital to call me back so that I can get some answers.

    Did you find your symptoms eased when you became pregnant? I've heard a real mix of some people who go into remission within about the 12th week of pregnancy and others who have had to stay on steroids throughout. It's all quite daunting for me at the moment. x

  • Hi, i didnt know i had ra when i had the children but i think everyone is individual with their ra and their pregnancies. I eventually had problems conceiving due to polycystic ovaries but had three wonderful children with ivf.

    I have heard the same as you that some people feel better when pregnant and some need more help with the ra, but i think the midwifes and doctors are used to lots of people having different illnesses and being pregnant, so i am sure it can be managed. I got diabetes quite badly when pregnant and they managed it and i had normal healthy sized babies and it went away after the pregnancy. came back last year though!!. But i think you do have to see docs more when u r pregnant anyway and they will keep in contact with Rheumy for you so i wouldn't stress too much over it. !!lol

    But the main thing is to try and shift this knee pain asap and let us know what they say if you have time. hugs Axx

  • I'm so sorry you are having all these problems. I've just joined this site and had my RA diagnosed a couple of years ago.

    My first problems were with my knees and it was agony at the time....so I really understand what you are going through. I took up swimming as was told this might help a bit and when in the water the relief was amazing.

    Although the pain in my knees has eased off now, I'm having problems with my fingers, wrist & shoulders.

    It's very hard because RA can leave you feeling very depressed as well, especially when you feel like the pain will never end. I'm still finding it hard to adapt and accept this, but I hope and pray you find some relief for your knees and I know that you will have your baby when you are ready.

    Warm wishes and as my Nan used to say..."keep your chin up lovey" xxx

  • Thank you :-) I'm in a bit of a catch 22 at the moment in that if I exercise I'm really feeling it the next day and I just don't have the energy or desire to do any form of activity as I am so sore. I love exercising and miss it a lot. You're told to try and keep active with this illness but it's so hard when your joints are so painful. I then worry about the muscles weakening which they have massively in my legs. I just can't seem to win and the rheumy team can't seem to get on top of things. Even on the anti-tnf my right knee was problematic.

    Maybe heading off to the sun for 6 months is what I need....what we all need in fact. If only I could win the lottery!!

    Here's hoping that I'll wake up one morning and I won't be as bad. In the meantime I'll try and stay strong and hope that pregnancy happens quikcly for me as I don't want to give up yet.

    All the best to you x

  • Hi I felt so sad for you when I read this,all you want is a baby,but to do this you have to come off your drugs,and cos of that all your pain is back,I feel for you I really do.has anyone rung you yet? I really hope you get this sorted.lots of love michelle xxx

  • I know it's so frustrating :-( I've not heard from my rhemy team so it's not looking likely today. They have called me early evening in the past so fingers crossed they will today!

    I'll keep you all posted. Thank you for all of the kind words.

  • Hi there,

    my knees have been hugely swollen for over 10 months now & absolutely nothing seems to bring down the swelling. My Rheumy considers that I have significant damage to both joints and he also blames 'quad failure' for how quickly this happened. The quadricep failure argument doesn't add up to me, I'm far from sedentary, even now.

    I also saw a private Rheumy who, instead of telling me to strengthen my quads, said that I'd have an uphill struggle doing so given the size of my swellings. However the NHS Rheumy still thinks I should be doing specific quad exercises.

    Like you, I find that the knee exercises Physio gave me now are either impossible or cause extra pain and soreness that lasts for days. I haven't been to Physio for a couple of months but am going to have a telephone assessment with them this week. I'm going to explain that the situation is now more difficult and complex and that I need some real help with this.

    I too am completely discombobulated about my knees. I'm meant to be heading towards anti-tnfs but from what you say they are not guaranteed to work. I can see that you have quite enough to think about at the moment but I think I should mention that I'm going to keep investigating whether or not I might have Lyme disease. I did have a test back in August but NHS tests are notoriously unreliable and the Rheumatology dept. messed it up with an administrative error anyway so I've had no result at all! It's just that every source of information I read about Lyme disease arthritis features hugely swollen knees that just will not go down. I don't want to consider other possibilities (I was relieved to finally get a diagnosis of Psoriatic Arthritis) but I can't deny that my symptoms do seem to fit with Lyme.

    On a more positive note, like Luthien I find that swimming really helps - the effects can limber me up for a day or even longer if I'm lucky. I've also found that Naproxen eases both pain & stiffness though its effects do seem to be lessening. I suppose my main advice is to do frequent gentle exercise - just stretching and relaxing the legs makes quite a difference to my mobility. And ask for physio help, most definitely.

    Your desperation is understandable & I think you should really push for an immediate Rheumy appt. so you can tell him or her exactly how things are. I haven't even asked my Rheumy how long he thinks it will take for the swelling to go down but suddenly it seems an obvious question. If yours can't even begin to answer that then maybe it is time for a second opinion?

    Hope your dreams come true very soon & that your knees improve too. I'm absolutely determined that mine will, just not quite sure how yet!

    Christina xx

  • Thank you for you response. It's good to hear (if you can say that!) that it's not only me who is suffering with the dreaded knee swelling. I need to try and get back to seeing a physio but I know that the waiting list on the NHS is extremely long. I have an appointment on 3rd December with my rheumy but am hoping to bring it forward. I should hear something this week.

    I do attempt gentle strenghtening exercises most days if I can just to feel that I am doing something. It seems harsh of the doctor to blame your joint damage due to "quad failure" I think it has more to do with the fact you have RA or has he forgotten that!

    I must admit my rhuemy is very good and the past few steroid injections I've had in my knee have really helped but they seem to wear off after about 6-8 weeks. With regards to my other knee, the problem with that is a Baker's Cyst on the back which I think will need draining. Hopefully that will give me some relief. I imagine you've had several of these injections too?

    I don't really know much about Lyme disease other than it's caused by Ticks? I know that it can be quite hard to diagnose as symptoms can be similar to other illnesses. Do you think that you have been bitten by a tick to think this? If you do, you should be on antibiotics to knock it on the head.

    With regards to the anti-tnf, it worked fantastically for me. I was tried on Humira and Infliximab initially which both worked for my joints but caused bad skin rashes so I had to be taken off them. Enbrel was the drug that finally worked for me and I think I went into a medical remission for about 7 years, it was wonderful. My knee started giving me some problems about 18 months ago and the Enbrel seemed to stop helping that one joint, other than that I ws still great. It was very strange. I'd definitely recommend going on the asap as they could be the answer to getting rid of your knee pain. I say go for it and think that they will work. We have to stay positive through all of the pain we suffer.

    Let's hope we both get some answers soon and some relief from out pain.

    All the best.

  • Hi Janeye, sorry if I sounded negative. I'm generally quite hopeful about the prospect of anti-tnfs but your post rang a chord with me about how intractable knees can be, possibly because it is such a large joint??

    Like I say, I don't relish the prospect of investigating Lyme disease as a possibility, but Lyme seems to be a blind spot for most Rheumatologists so it's a case of self-help. Perhaps it's not that common but people whose Lyme disease goes undiagnosed long enough to lead to chronic arthritis can, it seems, need very long courses of antibiotics which doctors often won't prescribe so I wouldn't push for that without organising a more reliable test which means by-passing the NHS. Quite a performance, I think!

    Yes, I've found steroids and injections very helpful too. Having the Bakers Cyst drained sounds very promising - if you can get back to one good knee that would presumably make a big difference to your pain levels and mobility. And the fact that you've already had such a long remission surely bodes very well for the future? Thanks for your encouragement, it should have been the other way round!

    Christina x

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