LUpus Patients Understanding and Support
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Feeling annoyed

Went to see my GP today as my back/hip pain is getting worse even when taking cocodamol and gabapentin, and not at the pain clinic till march,only been waiting since last august!! I also mentioned other symptoms I've been having : sore shoulders and neck and pains in my hands and wrists going into my elbows also I've been getting a jerking movement in my head/neck when falling asleep, her response was I've never heard of that one then gave me a prescription for ibuprofen that I could have got at the shop !!!! Rant over

4 Replies

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

I can understand your frustration at your GP. It seems to me that if your GP doe not know, you should be referred to a rheumatologist who might know rather more! Not all rheumatologists are experts in lupus; some have never seen or treated a lupus patient. At the very least, you should be having basic blood tests regrading your pain and its causes. Waiting to be seen at a pain clinic is, IMHO, not the answer because you need to know why you have pain. For example, if you have a low C Reactive Protein (CRP) and a high ESR, this shows inflammation. If the CRP and ESR are high, this my denote an infection. If you have not had any basic blood tests or a discussion about the causes of your pain, I think you need to discuss this with your GP.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

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I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!



Thanks Ros, I do see a rheumatoligist I'm due there in May but that will be 7 months since I last saw him, sometimes I sure they think I'm making things up ;(


It is not unusual for people to feel this way - the sense that no one believes us can be very destructive and it becomes more difficult to talk to the doctor whose job it is to help. I would recommend that you write down all your childhood illnesses from birth until now and if possible with dates. Any new symptom, write down with dates and take all this information to your consultant each time. You can include all th results of your blood tests as well. All of this will help your consultant build up a picture of what is going on. Include everything - including any changes in mood - anxiety and depression, for example.

I would also try to get an earlier appointment as well.

With good wishes,



Dawn I know your frustration and have every symptom you explained. So I am not the only one with the jerking. I now have that in different areas. Sometimes my head and neck other time my legs or an arm.

To the defense of your GP he probably has no idea what to think about most of your lupus symptom. I see my Rheumatologist every 3 to 4 months unless I have a flare. Maybe you can make an earlier appointment. I have had my GP for 20 years and he is amazed at my lupus symptoms and how many things go wrong. I know he feels helpless that he can't do more to help me. Every thing this disease can come up with is crazy on top of the fact that the blood work will not always show the reason we are hurting in so many places. Once I asked my doctor a question and he had a great answer. I said why do I always hurt and feel horrible in so many places. He said what do you have and I said connective tissue disease. Lupus falls under that I believe. Then he said what part of your body is not connective tissue? That helped me. We have a disease attacking our bodies. It is hard and unfair but it explains so much. Hope this helps a little.


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