Where do I go from here?

I have SLE, Sjorgren's and Crohn's. I have had worsening joint pain and I had been to the doctors and been given zydol 50 mgs. 2 x 3 times a day and Paracetamol 500 mgs. Since October 2013, I have had severe neck, back and shoulder pain, together with swelling and stiffening, eventually I managed to get an appointment for an X-ray after discussing it with another doctor. The results of the x-ray showed that the disc bones in my back are now crumbling, however, when I ask the locum doctor what the results of my neck showed, she told me that no X-ray of my neck had been requested by the doctor I had seen. I explained why I had asked to have an x-ray and she pulled a surprised face, when I told her why I had requested it. She told me that she would send me for physiotherapy on my back and discuss it with my own doctor.

My husband had an appointment with our own Dr. as he has "mild to moderate" Alzheimers and he wanted to do another assessment, so I requested a double appointment. I asked my own Dr. if I could have an x-ray on both of my hands and one on my neck due to the swelling, and severe pain. He replied that I had already had an x-ray on my neck. So I told him what the locum doctor had told me. He then told me that my neck was due to my age, I am 62 in May this year, and of course my underlining condition as an after thought, and he would not send me for more x-rays and that I was being sent for physio but he would have a word with the lady doctor just to check she had sent the request form.

He then turned his attention to my husband, who is in complete denial of his condition and told me he wanted him to visit another surgery for blood tests, the day after tomorrow and when these had been done to bring him one evening to another surgery for the results, assessment and testing. My husband works as a self-employed barber, but obviously cannot drive due to his

condition.

I am not a "moaner" of my condition, I try extremely hard to get on with it and not bother people, as I am a very private person, but I feel let down by him and when I talk about it I just cry, which is very unlike me. I just keep thinking, if my own doctor is not interested where do you go?

Thanks for listening it means a lot, but I just don't know what to do next.

Lots of love,

Mitziemoo. x

7 Replies

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  • Hi Mitzimoo

    So sorry your having a tough time with your own health and your husband's health is a big worry. Probably why you are tearful. Can I ask are you due to see your Rheumy Consultant any time soon? He'd be able to help with the joint pain especially if Zydol doesn't help, would be worth trying to bring it forward via a cancellation . You are going to physio which could help your back and neck, a long wait I know. A lot of spine and neck problems can be due to our age, wear and tear although I know it feels as if we're fobbed off!. If the pain continues a referral to a PAin Clinic could be helpful, I go for a back problem and it's been so beneficial to me. I hope you get the right help for you and your husband. Best wishes.

  • Hi Misty 14,

    Thank you for getting back to me. I really do appreciate it. My next Rheumy appointment is 17th June, 2014, so not too far ahead, and the Pain Clinic is a really good idea. I think I was just having a bit of a "melt down" and did not know where to go or who to talk to. So thank you so much for being there. You have no idea how much it has helped. Love and Best Wishes.

  • Hi Misty 14,

    Thank you for getting back to me. I really do appreciate it. My next Rheumy appointment is 17th June, 2014, so not too far ahead, and the Pain Clinic is a really good idea. I think I was just having a bit of a "melt down" and did not know where to go or who to talk to. So thank you so much for being there. You have no idea how much it has helped. Love and Best Wishes

  • I do feel for you M, it is awful to feel your GP is not listening to you. It seems to me that your best route forward for your own health is through your rheumatologist. Have you got an appointment planned? And if you feel your GP's surgery are not helping you you have every right to change GPs. Good luck with everything.

  • Thank you so much for your advice and getting back to me. My next Rheumy appointment is 17th June, 2014, so not too far ahead. I think I was just having a bit of a "melt down" and did not know where to go or who to talk to. You have no idea how much it has helped you just being there. Love and Best Wishes.

  • Hi sorry yr having a hard time it really does feel like an upward battle sometimes. I have had problems with my neck and spine for years - I begged for a scan in my 20's which did show cervical spondylosis and lumbar disc herniation I was told I was young to have it but it wouldn't be the cause of my pain?!? Anyway I've been seeing a really good osteopath over the last 6 years which has helped tremendously. They are very very knowledgable and specialise - where drs don't and if yr lucky they will provide pain meds and physio. My rheumatologist has told me that she wants to do an MRI of my neck and spine to see if it has deteriorated - as when I flare and the inflammation hits my neck it causes neuro problems. I would bring this up with your rheumy and explain how you feel - you have enough to cope with. It really bothers me that when we need help they r too busy penny pinching. I'm only 42 now - sometimes we just have to fight harder. I really wish you and yr husband well - hugs x

  • Hi mitztiemoo, I have read through your post several times, and still can't understand what is going on at your GP surgery !!! You and your hubby are being shuffled around like sheep. Am I missing something here. I have an aggressive streak in me when it comes to, gps, and consultants being downright rude and dismissive. ( it's because of my past experience in getting diagnosed) . I'm sure I will get ' slammed' for saying this but I thought lupus inflamed joints were not to be over used, as we are told to rest when flaring. I'm sure physio will help when not inflamed but, it's the lupus that needs managing. Otherwise let's all drop the meds and go to physio for the cure.!!!! You and your husband deserve better than this, so I would see about changing your GP. As for your emotions, I'm not surprised you are tearful. You have a lot to cope with on your own. Do not see tears as a sign of weakness. It's a healthy unloading of all your pent up frustrations. Please do something about your GP soon, for both your sakes. Take care.

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