None the wiser

Tigerfeet
Tigerfeet Member Posts: 8
edited 23. Jul 2017, 17:25 in Living with Arthritis archive
Well I've finally had my report back from the Rheumatologist and it was all normal. My bloods were all normal and I have no inflammation so definately not an inflammatory arthritis and the xrays she took (hands, feet and hips) were all normal too. Obviously in one way I am pleased about this but on the other I can't understand why I have so much pain and crunching in my joints. She did say at the consultation that very early osteoarthritis may not show up in xray. I already have confirmed spondylosis and herniated discs in my neck. This was diagnosed on an MRI last August and the burning pain and crepitus which has now appeared in lots of other joints is exactly the same as my neck pain. I do worry that if I am in so much pain now (especially in my right hip, which is often so bad it wakes me up at night) how bad am I going to be when there is actually photographic evidence of damage?

Anyway, I just want to say that I am finding this forum and the website a godsend. I am doing daily exercises and yoga and have also invested in a couple of wheatbags(which I read about on here) and find these very soothing when things are bad. I have also started on Amytriptyline and this is helping with sleeping and some of the burning pain (I think).

I will continue to use the forum for tips and advice and will chip in with my own experiences as I become an arthritis veteran :D

Best wishes

Anya xxx

Comments

  • moderator
    moderator Moderator Posts: 3,640
    edited 30. Nov -1, 00:00
    Hi Anya,
    it must be very frustrating for you to still not have a clear diagnosis in relation to your hip, however please do not be under the illusion that you do not have arthritis. Spondylosis of the spine and neck is another way of saying osteoarthritis of the neck. Please have a read of our fact sheet on this topic here https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/448-osteoarthritis-of-the-neck
    as you will probably be aware most forms of osteoarthritis are managed by the GP, and your rheumatology consultant is right in saying that it is not always easy to pick up the early signs of osteoarthritis in the hip by x-ray. However if you are continuing to have a lot of pain in your hip this is certainly something you should discuss with your GP regularly as they will be able to support you and possibly refer you to the physiotherapist for some exercises. Please don't sit in pain thinking that there is no help out there for you, as your GP may also be able to refer you to an orthopaedic consultant should your hip pain continue to be unbearable.

    I'm so glad that the forums have been of value to you, and we are always here to offer suggestions and support. We are extremely fortunate to have such knowledgeable members who are extremely good at sharing their experience with others. Please let us know how you're getting on and keep us up to date, I look forward to seeing you "chip in" your thoughts and ideas as it's always better to have lots of views on how to manage our arthritis.
    Best Wishes
    Sharon
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I can understand your frustration; it is hard when we know something is wrong but our symptoms are not presenting in the right way for the reason to be discovered. I have a creaky foot in both camps, I began an auto-immune arthritis in 1997 then in 2011 osteo was diagnosed, the latter by my GP and confirmed by Xrays at the hospital. My rheumatologist deals with the meds for the former and the GP advises me on pain relief. The OA mainly affects my ankles, knees and hips.

    Regular exercise is essential for maintaining the strength of the muscles surrounding the joints, I have recently had a very active (for me) eight weeks or so and am feeling the benefits with somewhat reduced pain but much more flexibility in my knees and ankles. I plan to keep this up now I am back at home for a few weeks so that I am physically prepared for our next adventure. I wish you well with all your endeavours and remember we are here and so understand the challenges because we too face them. DD
  • stickywicket
    stickywicket Member Posts: 26,701
    edited 30. Nov -1, 00:00
    You're right. It must be very frustrating but you are trying your best to improve matters. You can do no more than that and I've always found crystal ball gazing to be a total waste of time. We can end up so concerned about the future that we forget to enjoy the present. Pain itself, when of the arthritic variety, is merely pain which we can learn to put up with. Pain plus anxiety gives us a double whammy and they feed off each other.

    For what it's worth, I'd just keep on doing what you're doing and monitoring things (but not in an obsessive way) then, if things deteriorate, go back to the doc. Further x-rays might be more revealing.
  • Wivenswold
    Wivenswold Member Posts: 10
    edited 30. Nov -1, 00:00
    This happened and continues to happen to me. I was treated for Gout for 6 months and it was only when I insisted an ultrasound scan that damage consistent with RA was found.

    It's important to not to let specialists sway you if you think they haven't grasped the issue. A year after being diagnosed with Seronegative RA, a "specialist" at my local NHS hospital told me that I don't have RA and that there could be a number of reasons for sore knees, thigh cramps, pain in my hips and groin and chronic fatigue.

    Stick to your guns, you know your body better than anyone else.
  • barbara12
    barbara12 Member Posts: 21,257
    edited 30. Nov -1, 00:00
    Hello Anya
    I am so pleased you are finding the forum so helpful, has for the results arthritis is so very complex,there are a few hundred different types, and it can take many blood test and more to come up with the right results..so glad to hear you are doing yoga..and getting on with your life the best you can , this really will help...x
  • Tigerfeet
    Tigerfeet Member Posts: 8
    edited 30. Nov -1, 00:00
    Thank you all for your kind, and as always, sensible advice. It is much appreciated.

    The joints are all quite manageable today but if my hip and other bits do start misbehaving in a big way again, I will indeed be seeing my GP for further discussion. I do remember when all this began, getting into a right tizz over my neck (I was at the time getting excruciating nerve pain and numbness down my arms) and nothing showed up on plain xray. The MRI however showed osteophytes, compressed nerves and bulges. I am therefore sure there is more going on in other joints than the xrays showed. I have accepted the neck and arm pain now and everything did eventually settle down. It is kinda more of a background annoyance now. When all my other joints joined in too I did start fearing the worst and as Stickywicket quite rightly points out, this made the situation and the pain much, much worse. Now that I've calmed down I am finding that the pain fluctuates, with good and bad weeks.

    Daisy dream, I am glad that your recent exertion has had such a positive effect on your pain and stiffness. It does seem so counter-intuative to exercise painful joints, but it really can help if done properly. I unfortunately am probably over-doing things physically because of my job. I am a ward-based nurse and there is little time for resting (or even having a wee for that matter :lol: ). It is very physically demanding so I have had to drastically reduce my hours but I am still finding it hard going and really suffer after a busy shift. I know I will seriously have to reconsider my options for the sake of my health, but I really enjoy my job and my boss and colleagues have been brilliant. I am sure there are lots of people on here who have had to make changes and adaptations they didn't want to make once the dreaded 'Arthur' made an appearance and I suppose I will have to do the same when the time comes.

    Sorry this is such a long post. It was supposed to be a quick thank you, but once I started, there was no stopping me :lol:

    Thank you for listening to me and wishing you all a pain free day.

    Anya x

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