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What to expect from the Rheumatologist

I have been diagnosed with fibromyalgia in 2004 and about a year ago I started to develop other symptoms that are far more intense than the symptoms associated with fibromyalgia. It includes pain in the whole body , sharp burning pain tha can effect either side of my body and sometimes the whole body from the top of my head all the way to my feet and other times it can effect just quadrants and halved. It tends to be located in a specific part of my body for a few days before it switches to other places. I also feel tightness in my joints that feels like my skin is rigid and it is painful to make movements like closing my hands and sometimes from the middle of my feet to my toes gets yellowish, cold and I lose all the sensation on them. I has worsened in the last 2 years and now I can only get out from bed with ibuprofen. When i move around more the burning sensation gets more intense and it least longer to disappear. The only thing that helps is if I lay down . I also have some kind of vibration sensation that goes from my back down to my feet especially when I am laying down and it intensifies when I move around more. In a x-Ray it was diagnosticate that my right kidney is smaller than the left side.

I have I long history of migraine and headache that have worsened in the last 2 years. I am having difficulty to walk as each time I stand up my foot hurts and I get a sharp pain on my head. And if I tend to walk it turns to a migraine. I also have been diagnosed with /Raynaud'sphenomenon.

During my neurological examination the doctor found I have 4/5 weakness of shoulder abduction bilaterally. Reflexes were briskish but not pathological and sensation was objective normal but subjective reduced in the right hand with sparing of the median aspects of the hand (not sure what that means). The reflexes were very brisk at the knees and at the ankles and the plantars were both mute. I have done EMG, IMR exams last week. And I did a lot of blood test including all tests related to autoimmune diseases.I have got my results and apparently the only concern is my c reactive protein that is elevate ,range 0 to 4 mine is at 9 mg/l.


Good news! (I hope)

After a long wait i got to see a doctor who put all the peaces of my symptoms and exams together and come out with a plausible idea of what I have.

Yesterday i had an appointment with pain management clinic at sant Thomas hospital in London. The doctor was greater, she took the time to look thought all my exams and reports from the other specialists that I went and finally explained the meaning of each of them to me. The apine scan that I did in December 2014 was reveles to me and as i was not awere of its content i was not able to understand my symptoms. The doctor from the pain clinic told me I have mild stenosis and most of the stabbing pain on my leg and food and loss of sensation in my foot is caused by it. She told me I also have peripheral neupathy in most part of my body. She referred my to a rheumatologist and told me to increase my anticonvulsant to the maximum dose and if it does not work she will replace it for another anticonvulsant. I will be taking part of a in-house program in which I will be staying in the hospital for four weeks with a group of 10 people. We will be having a 'course' to understand out pain and make the best in life of what we have. We will be accompanied by a physiotherapist, occupational therapist. Psychologist, nurse and doctors during the 4 weeks of the program.

So I guess I want to know if the peripheral neupathy might be caused by a rheumatic illness.

Ps: I started this campaign if any of will agree with what I am saying and want to sign the petition it would be great. If you want to add any different thoughts and ways to improve it I will appreciate.

6 Replies

i can understand how frustrated you must be at the lack of progress with managing your condition. However, I do think that that having a letter from your GP for a private consultation is very valuable as it can contain what investigations and results have already been done and your history so far. It does make you dependant on your GP, but I feel it is better to change your GP and obtain general whole body care than go from specialist to specialist with disjointed care.

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You do seem to have a lot going on. Be prepared, I would hope whoever you see will order his own raft of tests, imaging & examinations, no Rheumy worth his salt would rely on historic findings. He should join all the pieces together like a jigsaw to form the whole picture & diagnose you. Your CRP isn't overly high, <6 mg/L is preferred so it does show some inflammation but again this is only part of the picture. Also any number of meds you are taking could sway the result, even paracetamol so this & other tests for inflammation should be repeated.

I can empathise with the continual headache/migraines. I have cervicogenic headaches which only just fall short of the debilitating effect of the migraines I used to have reasonably regularly. If you're continually medicating with the same pain relief you would benefit from seeing your GP about reviewing your meds. Often with this type of pain the longer your take the same med it is possible that they cause the reverse effect & actually make the symptoms worse.

I would ask your GP to check your blood sugars too, it is a quick enough initial test. Whilst peripheral neuropathy is known in RD (caused by inflammation resulting in nerve entrapment), it's most common in diabetes sufferers.

I agree with oldtimer, as your primary carer the referral should really come from your GP, he holds your medical history & really needs to be kept in the loop. When I had private initial diagnostic consultations I chose who I wanted to see & my GP took it from there. You also need to keep your GP sweet, if you change over with the same Rheumy to the NHS your GP may be requested to sign a shared care agreement!

I hope now you've received your referral things start become clearer & make more sense of your symptoms. Take pics of any inflammation, particularly if it is not constant, if it comes & goes. Bullet point notes will also be helpful, as is a diary. If you've not been doing one start asap, it could provide relevant info for your Rheumy, he may recognise a pattern forming.

Good luck & do keep us updated. :)

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I think you mean Neurapothy. I am so sorry you are going through this. I have severe RD and Fibromyalgia, Sjogren's, Pericarditis etc and Migrains for most of my life. I also have endless drug allergies which make life interesting. I have been on an endless rotation of drugs since July. My Rheumy is now putting me on Orencia but intervenors rather than injections. My C reactive protein was 84.7. My cyclic Cittrulinated peptide was 300./ 3 is high. I saw a third and fourth Neurologist at an MS clinic. They had never herd of CCP being so high. Sadly it indicates a very severe erosive rheumatic disease. I sincerely hope your in house session is helpful. Chronic pain can wear you out. Have they run a Rheumatoid Factor or CCP for you yet?


No, i haven't done the rheumatoid factor and CCP. What this tests are for?

I hope I will be getting a report letter from the pain clinic this week and things will be sorting out very quick.


With autoimmune disease it is not uncommon to have several conditions at the same time. This coupled with the fact that it expresses itself uniquely to the individual. What I mean is it can be different symptoms for each person. RF and CCP are markers used to indentify Rheumatic disease. Many people are seronegative, do not show positive on tests. But a Rheumatologist goes by clinical history and physical exam not just tests. The bilateral issue with joints just sent up a red flag. Does not hurt to be tested, it is a simple blood test. It is always best to know what you are dealing with.


It's good that the tests related to auto-immune diseases were normal, these may have included the Rheumatoid ones but just under other names - like auto-antibodies. And a CRP of 9 is really not that high, this can go into the 100's. So it could be a mechanical cause, rather than an inflammatory disease. Spinal stenosis and peripheral neuropathy can be caused by osteoarthritis as well as one of the rheumatic diseases, so that might be why you have been referred to a rheumatologist. It can be horribly painful and debilitating, so I feel for you.

I'm sorry you have had such a wait to be treated. Unfortunately health services are very over-stretched.


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