Dead end

Jenny123
Jenny123 Member Posts: 4
edited 27. Jul 2013, 17:29 in Living with Arthritis archive
Hi all,
Have been doing some reading here and am inspired to ask for some of your sage advice.I am 36 and have been been having problems with my bones for a while but particularly in the last three years.
It started with bad pains in my hips which made me cry (and I am a pretty tough cookie).I had a scan which showed nothing.Then a week later a disc just popped in my lumbar spine which was excruciating as it pressed on a nerve.Cue painkillers,physio.I had had problems since with sciatica and bursitis of my hip.I worked very hard tolose weight annd excercise and I was coping well.Then my upperback joined in.I got a horrible pain around my cervico-thoracic junction and have problems withit and numbness in my fingers since.An MRI showed I had arthritis and bulging discs all through mythoracic spine.Then my joined in.I tore cartilage and had my knee scoped-my knee cap has grade 4 arthritis and was cleaned up.I am eight weeks post op on this and to be honest,not feeling any better.My foot is now joining in,have a bunion on one side and seemto be deveolping another I went to a rheumatologist 1 1/2years ago.Was told had a lot of wear and tear for my ageand again given painkillers and told would need longterm physio.I also have underactive thyroid and started on meds for this but has not helped with joint pain.So where is all this going?.My ANA is highly positive too.My GP says there is no point going back to rheumatologist but the first thing every ortho and other doctor I have seen has said I would send you to the rheumatologist.
I am so tired of being in pain and feeling like a ninety year old when I get into bed at night. I am exhausted come the weekend and I spend it trying to gather some energy work during the week.I don't have any family support.I know that was some rant but I don't know what to do now and would love some advice.

Comments

  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hello,

    You desperately need to be re-evaluated by a rheumatologist, hon. Can you request a referral from your GP or get in with a different GP to be referred? I hope you can and soon, you shouldn't be suffering through all this without a new rheum. opinion.

    I would be following your ortho's advice.

    Take care,
    Anna
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it is lovely to meet you and I hope that we can help with information and support.

    You say you have been reading the threads for a while so I am sure you have realised that there are two forms of arthritis: osteo is usually (and maybe casually) termed the 'wear and tear' kind and then there are the various forms of the auto-immunes (only OA comes in grades). I am lucky in that I have a creaky foot in both camps. :wink: I have psoriatic arthritis and the joint damage from that has led to the OA: my rheumo deals with the PsA and my GP with the OA. I just get on with both.

    I am very tired but I do think that another visit to a rheumatologist is in order simply because GPs know a little about a lot but rheumatologists know a lot about a little; I don't know why the various docs you have seen say they would refer you but haven't so I would urge you to insist that they do. The times they are a'changing, maybe? Which knee was scoped and is the troublesome foot on the same side?

    I have to go to bed, I am whacked. I will be back tomorrow and I wish you well. DD
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi again,

    I felt I should explain my slightly desperate tone in the previous post. You see, I followed my trusted and lovely GP's advice and did not seek a rheum opinion. I was referred right away when a locum filled in for him ~1.5 years after my problems started. Turns out my out GP was wrong and I should have been referred a couple of years earlier. I was initially diagnosed seronegative inflammatory, then PsA.

    I loved my GP and still can't get over this horrible mistake on his part but we are all human and make mistakes. A rheum has years more of special training to diagnose these hard-to-diagnose diseases. It sounds like your problems have progressed in the 1 1/2 years since you had the first consult. Maybe the picture for the rheum now will point to a diagnosis and treatment for you. You can't lose seeking another opinion.

    I'm reiterating my story yet again in the hope that someone will benefit from my mis-judgement in trusting one GP. It's your life and you have to live with the consequences of one GP's opinion, so what would be the harm in seeking a rheum opinion?

    hoping this helps,
    xxAnna
  • stickywicket
    stickywicket Member Posts: 26,917
    edited 30. Nov -1, 00:00
    I agree with the others. Ask for another appointment with a rheumatologist.

    It's quite possible that you don't have an auto-immune form of the disease and, if not, you will have to learn to handle it all with pain relief, exercises, distraction and a whole load of other techniques. BUT, if you do have an auto-immune form, you need the meds that will keep it in check. The GP can't prescribe these.

    It can be quite difficult to challenge a GP and insist on seeing a specialist but you can point out that all the other consultants have said this is what should happen. (So why didn't they just refer you themselves :roll: ) If you don't you'll always be left wondering.
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Welcome Jenny and pleased to meet you, I can't really add to what the others have said I just wanted to say hello and good luck, keep us posted how you get on....................Marie x
  • barbara12
    barbara12 Member Posts: 21,274
    edited 30. Nov -1, 00:00
    Hello Jenny and welcome
    I have OA but been told it could be inflammatory arthritis...I like many on here have had the run around with gps..my first one told me that is was pointless seeing a rheumy because the treatment would be the same :roll:
    I have OA in multiple joints and just had my first hip replacement...I am still shocked at the speed that it has spread..
    Have you been seen by a pain clinic they can get you the back injections and also review your meds....have you had a MRI of your back..if not ask your GP
    I do hope you get some help very soon xx
  • Jenny123
    Jenny123 Member Posts: 4
    edited 30. Nov -1, 00:00
    Thanks so much for allyour kind replies.I was having a bad day yesterday and needed to get things off my chest.Despite the fact that thingsare worsening it seems to be an attitude of you saw the rheumatologist so that box is ticked and done with.My right knee was scoped,my right foot was already painful and my left is now hurting.I have had bursitis and have sciatica on the left side.
    Have been to a lot of docs this past while and am tired of it but I will find the strength to go again.
    I have a great physio who is not at all happy with the way things are going and he has said he will support me with respect to a referral.
    Have had MRI's of my whole back,degeneration all the way through thoracic spine with three bulging discs to thelumbar spine with ruptured,dried out discs which press on nerves.
    Anna,I really appreciate your message,was quite stunned too to be told I will eventually need my knee replaced,my GP just kept telling me to rub some anti-inflammatory gel into my knee,it took tearing my cartilage to be taken seriously.
    My GP is great for some things but there is another in the practice who is better with joint problems so will go to them next time.
    Thanks again for all your help.Will keep you all posted.
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi Jenny;

    Glad you're feeling a bit better today.

    It's so hard to summon the courage to visit yet another doctor. I waited too long and was quite exhausted and desperate by the time I did. It took me ages. I had gotten comfortable with knowing one doc well, however, once I changed, I found someone who listens, does appropriate tests and doesn't hesitate to send me off to various consultants. It's made a huge difference to the level of anxiety I experience. Now I have a diagnosis, on treatment whereas previously I was living under a huge cloud of a mysterious illness and out of control pain. And, we all know when you are more anxious, pain is worse.

    My GP was very confident in his opinions but never backed them up with scans , etc. The result was I do have a deforming arthritis on xray and damage in multiple joints. He was positive I did not. I would be doing better now if I had started on anti-rheumatic drugs years earlier. I sure hope you find someone who can help you. You are awfully young to have so many problems. I was really sorry to read that.

    Good that you have your physio backing you up. Hope you have luck with a new doctor.

    xxAnna

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