It is lupus

[Catherines03]

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 10 months and now I can only get out from bed with ibuprofen and paracetamol which I have been continues taking for the last 10 months. When Work out more than I 'should ' like going to the supermarket the burning sensation gets more intense and it least longer to disappear. The only thing that helps is if I am laying down . 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. 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. But i have not seen my neurologist since the exam was taken . I have been referred to a genetic clinic and I During my consultation I did a blood test which should show any chromosome falt.

I have done some research on the internet regarding my CRP and I only understand that I have a 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.

I am wandering if anyone has any idea of what to make of my symptoms .i also have been referred to a genetic clinic.

Thanks

[Freckle1000]

Hi.

I think ? C reactive protein. tests for inflammation.

I have Lupus and for me this test is used a lot as a kind of double check. The CRP test will at least tell the doctors there is inflammation going on somewhere in my body, even if other tests don't.

I'm sorry, I don't have much of an idea about your set of symptoms.

Although lupus people share some DNA, I've never heard of anybody being diagnosed with lupus through a genetic clinic.

I really hope you can find an answer soon, so you can get on with some treatment for whatever is causing those nasty symptoms.

ps. Given that you have Raynaud's it might be worth chasing up a Rheumatologist?or generalist specialist? just for another perspective or opinion.

Again. I am so far from being an expert its not funny, but Raynaud's 'might' be what's causing your skin/muscle tightness in you're hands and feet.

I think it could be important to get this vascular aspect of your symptoms tended to properly.

I believe there are medications that can help with this.

x.

[falling2peices]

Sounds familiar except my test come back with in normal range but elevated and my anas chose to be positive sometimes and negative others

[morenasa in reply to falling2peices]

my autoimmune also tested positive and negative. They Md decided to treat me for Brucellosis because I ate goat cheese instead of doing more testing. I am very concerened I feel as if these two meds are only hyping my symptoms and I feel more nausous and sick than before! I started to feel nauseous about a month ago and gradually went to nasal drip, feeling as my brain was on fire, cold sweats, muscle spams, brain in a fog constantly, my brain only feels sharp if i do not eat. Lost 20+ pounds in a month. Ringing in my ears, feels as if I have sinus infection. I feel sick as soon as a I eat. They put me on Levo before they decided that brucellosis was a "probability to my health problems. I almost ended up in the ER last night with an asthma attack and vomitting and feeling sick to my stomach. I keep begging them to do an MRI since the begging of the month since I noticed I forget things a lot my spelling has gone worse I cannot comprehend sometimes. I am very exhuasted I also tested positive for lupus but they say they need to do more testing. This is horrible! I feel so alone! to make things worse they have not even gone over half of my testing with me on my labs which I have gone in more than 7x times with 4+ tubes of blood taken at each visit! HELP!

[1TeiaMarie in reply to morenasa]

I have the same systems as you! I just thought it was just the lupus!

[Catherines03 in reply to 1TeiaMarie]

I will let you know when i have a diagnostic for my illness.

[1TeiaMarie in reply to falling2peices]

first my Ana was way up there an all off dr said lupus the next appointment all blood work came back normal an normal ana!! Does everyone have this happen? I thought when the Ana was positive it stayed that way!?!? Also heard that my Ana could just be under control now with all the mads!! Anyone know???!!?

[Fennella02]

Freckle's reply is excellent. The only thing I could add is that 9 is not high for CRP. It can be 100 or more. When raised, it can indicate virus, infection or any kind of inflammation. It rises and falls rapidly. Best of luck in working out what ails you. Clare x

[Catherines03]

Thank you everyone.

[Maya23]

Hi. I was diagnosed with Lupus in 2010, with the presenting symptoms being joint pain, rash, fatigue, flu like aches and sun sensitivity. My ANA was positive.

More recently though, other symptoms have got louder and louder, while my Lupus test results come back fine (ANA now negative). These other symptoms include something like you describe; particularly the burning pains all over, particularly in my tendons and muscles, with stiffness and weakness and nerve pain too. I have come to learn that this is Fibromyalgia though I'm not yet diagnosed, these can come after and on top of a lupus diagnosis.

I would ask to be referred to a rheumatologist, particularly as you have Raynauds too. They might check your ANA.

x

[Maya23 in reply to Maya23]

By the way, I've also seen a neurologist this year. He found a meningioma on my brain but this is not causing the symptoms.

[1TeiaMarie in reply to Maya23]

I have all this!my dr says lupus and fibromyalgia!

[Paul_Howard Partner LUPUS UK]

I will echo what others have said already and suggest that you try to get a referral to a rheumatologist. It is worth being tested for autoimmune conditions such as lupus. Hopefully they can start you on some treatment to help alleviate your symptoms.

I'm a bit concerned about your use of paracetamol. Frequent use of paracetamol over such a long period puts you at high-risk of 'rebound headaches', which could be the reason you feel your headaches and migraines have been worsening. I would discuss the possibility of this and alternatives with your doctor. nhs.uk/Livewell/headaches/P...

If you require more information about lupus, you can order or download one of our free packs at lupusuk.org.uk/contact-us/

[Catherines03]

Today I went to see my GP and she put me on an anticonvulsant tablets (gabapentin 300mg to increase to 900 mg) to deal with the neuropathic pain that was pre diagnosed and I she told me that she can't refer me to a rheumatologist until I have my next consultation with my neurologist which is in March. And even if so I would have to be referred to a musculoskeletal assessment first than they would decide to send me or not to a rheumatologist. I will try to do see a private rheumatologist because I cannot wait any longer to get better.

[falling2peices in reply to Catherines03]

Careful with the gabapentin ii was on it for about 3yrs highest dose1200 mg day and never found teleuf butwhat i did find was now my body jerks alot been off meds 1 yr and still jerks

[Catherines03]

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.

change.org/p/rt-hon-david-c...