What I might have

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 6 months and now I can only get out from bed with ibuprofen and paracetamol which I have been continues taking for the last 6 months. When Work out more than I 'should ' like going to the supermarket and cleaning my house on the same day the burning sensation gets more intense and it least longer to disappear. The only thing that helps is if I lye dawn. I also have some kind of vibration sensation that goes from my back down to my feet especially when I am lying down and it intensifies when I move around more.i have also problems in my kidney where I have done some x-Ray and my right kidney is smaller than the left side.

I have I long history of migraine and headache that have worsened in the last year. Nowadays my migraine tend to start when a walk for less than 10 minutes and it usually is associated with pain that radiates upon from my neck over the top of my head to one side or another. 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 least month but I don't know the results. What got my attention is that I received a latter saying I have been referred by my actual neurologist to go to a genetic clinic and I am not sure why.

I am wandering if anyone has any idea of what to make of my symptoms and if it might be related to scleroderma and if so what is the connection with me been referred to a genetic clinic. I appreciate all the information you can give me because my neurologist will only enter in contact with me when he gets all exams results and if he will be waiting to have some feedback from the genetic clinic it will take forever. Thank you.

3 Replies

  • I am afraid nobody could even start speculating without knowing the results. Clearly they are testing your genes for abnomalies, maybe to confirm or exclude some preliminary diagnosis. Waiting for results is nerve wracking but it also makes treatment possible. You will be relieved knowing what is wrong and your doc will be relieved knowing how to tackle it, so be patient. I had a very aggressive onset and survived. Today 20 years later I have a normal life and swim every day 1 hour, do gardening and walking for hours. With the right diagnosis you may recover sooner than you dream of.

    Best wishes.

  • 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. But i have not seen my neurologist since the exam was done. I have been referred to a genetic clinic and I will be having my consultation on 7th of October. The pain has not improved at all and 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 have done some research on the internet regarding my CRP and I only understand that I have a nice infection in my body but I can't understand where it comes from.

    Does someone knows what it means, if it is a high level.

    Thank you

  • 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. For some reason even so I requested it before I did not had the results of my spine scan that I did in December 2014. The scan was kind of a key to understand the symptom I am having. The pain clinic doctor 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 stenosis. She told me I also have peripheral neupathy in most pet of my body. She referred my to a rheumatologist and to increase my anticonvulsant to the maximum dose and if it does not work she will replace it for another anticonvulsant. I also 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. We will be having two sections every day with physiotherapist and psychologist + the others.

    Part II-

    I will be having an appointment with a shoulder specialist, eye and oral and maxilla facial surgery clinic this and the following month. For some reason the genetic team still want to carry on further investigation.

    I hope I will be having a better summer this year and the following years.

    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.


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