Re: Itching and skin pain

[Hippykar]

Can you tell me whether itching and skin pain could be connected to lupus? I have had severe problems following spinal surgery and in the end they removed my metalwork thinking I was reacting to this. I also had huge amounts of pain in my back. I suffered terribly for two years where my skin was sore all over from head to foot, so sensitive that I couldn't bear any clothes touching me. It felt burnt. Even now when I touch my arm or face it doesn't feel like my old skin used to. I have had red spots come and go all over, which cause pain. I have a lot of nerve twitching and random patches of numbness. Dry mouth and red eyes. My skin looks a different colour to me. Sometimes the itching I feel all over is just terrible. Prior to surgery I had a couple of skin patches which they biopsied and said had features of morphea but not entirely and just said it was a slight skin change. I had severe headaches after my operation and severe thirst. My life has been completely turned around as I have no energy and feel just dreadful all the time. The pain in my back is now 100 times worse than prior to surgery. The hospital said I was reacting to all medication when they took the metalwork out and told me not to take anything. I had my back cut open from top to bottom for scoliosis and 21 screws and two rods taken out. The trauma of what has happened has left me very low. At one point, some of the doctors even tried to suggest it was all in my head! I believe that my body swelled and the swelling has caused damage. When I was younger I suffered from a lot of stomach pain. My spinal consultant said I had more degeneration than they would normally expect to see in someone of my age. I went through the menopause at 40. I have always had sensitive skin in the sun as I am fair and freckly but now I don't seem to be able to go outside at all. My arms and legs hurt, but especially my hips, back, shoulders, neck and I just feel like I am burning all over sometimes still, alternating with itching and pain. I am wondering whether my body has rejected the synthetic bone? My question really is this - could all this happen if I had lupus? Thank you for your help.

[LUPUSadmin]

Hi Hippykar and welcome to the commnunity.

It's possible that your symptoms are a result of lupus. Painful skin, especially in connection with light sensitivity, is quite a common symptom. Usually this features with a rash. Fatigue, as you have described, is also a common experience for people with lupus

You might like a free information pack to give you an idea of how to go about getting a diagnosis. You can send off for or download one of those here: lupusuk.org.uk/contact-us.

If you think you could have lupus, the best thing for you to do is go back to your GP and ask about lupus. You could ask for an ANA (Antinuclear antibody) test. This test looks for antibodies that attack the body and are commonly found in people with lupus and related conditions. The above pack should also be able to give you more information on this.

We also have a variety of publications that you might be interested in reading here: lupusuk.org.uk/publications.

Do you know if you've seen a Rheumatologist at all?

George

[Hippykar in reply to LUPUSadmin]

George, thank you so much for your reply. I have seen a virtual army of doctors and none seem certain what is going on at present. I have been tested many times by a very reputable rheumatologist and all of my bloods come back in the normal range. I do have a positive 1:40 ANA, course speckled, nucleolar sparing blood test, but this is considered normal? I seem to be a mystery at present. This all kicked off in a big way after my spinal fusion, although I am now certain that I have had things simmering for years and not been aware of it. For sure my body did not like that metalwork but I am concerned that the bone cement could also be a problem. I think I am lucky to still be alive after what I have been through. I would just like to know what is going on with my body. I became severely allergic to perfumes of any kind, even the smell would set me off itching even more. It's been hell. My stomach has also been affected. I couldn't regulate body temperature. In fact my whole body feels alien to me. I'm hoping that a dermatologist may be able to give me some clue as to what is happening. I understand that with these things it often is a wait and see scenario. They are worried to try meds on me because of my severe allergies and what may happen. My spinal consultant said he would be worried about even putting a needle in my arm because they don't know how my body will react! Life is hard.

[Purpletop in reply to Hippykar]

It sounds horrific! Your poor body feels under attack by everything after that operation. I suspect it will take a while until it calms down.

Are they controlling your allergy with anything?

As for lupus - such a stressful event as your op was is very likely to have triggered autoimmunity, be that lupus or another connective tissue disease. With an ANA of 1:40, though, it looks a lot more like severe allergy than autoimmunity but time will tell.

Are you taking any immunosuppressants at the moment? At least steroids?

I'm so sorry you feel so poorly.

[Hippykar in reply to Purpletop]

Hi Purpletop thank you so much for your reply. I tried a short course of steroids when I was really poorly about six months after they removed the metalwork but they seemed to make me worse so I had to stop. I have since tried hydroxychloroquine for a while which did sort of help with the burning pain which was horrific but they told me to stop taking them as I have no clear picture from my bloods what disease I have at present. As for anti-histamines, I have had different things said to me about taking these. Some doctors said don't because trying to suppress the allergies could ramp them up even more and others said take them. I tried cetirizine I think and they didn't do anything for me. At one point my face and lips were swelling when eating anything and I kept biting the inside of my cheeks. Just feel lost with it all really. My last bloods showed very low ESR at something like 2 and my CRP was very low too (1.5 I think). I therefore don't understand all the pain I am getting. Nor do they it seems. Could it be from past inflammation that has caused damage?

[Purpletop in reply to Hippykar]

Thats ridiculous, if you've noticed an improvement with hydroxy I don't see why you had to stop!

Going back to the op - did you have any artificial bone put in? That might trigger a reaction. I had extensive dental work back in 2005, which included implants and artificial bone augmented. Everything healed ok but from 2008 onwards I started having lupus symptoms. Too much of a coincidence - whether the titanium from the implants or the artificial bone, I don't know.

Pity the steroids aren't helping. I think in time your body will calm down but it will probably take a while. Sounds simplistic, I know, but I'd try eating a lot of organic veg (crammed with vitamins and antioxidants that feed your body cells), drink a lot of filtered water to flush your kidneys and keep everything inside supple and look to eliminate toxins - even in the shower gel, the shampoo, the face cream, etc.

I can't imagine how hard this must be for you. Just remember that our bodies have amazing ability to restore if we feed them right and allow them the time to do it. Try not to rush it and be good to yourself. You will go through this, just give it time.

Let us know what the dermatologist says x

[Hippykar in reply to Purpletop]

Hi there, so kind of you to reply so quickly. I had titanium alloy screws in my fusion (21) and yes I showed I was reacting to the aluminium (no surprise I guess), plus the titanium. I also had tricalcium phosphate and hydroxyapatate bone granules used in my fusion, mixed with my own bone. I am concerned about the bone granules as that cannot be removed. I have been on a strict diet to remove the metals from my circulating system, together with vitamins and other treatments to cleanse my system. I believe in the early days I saw the metals floating on the top of the toilet water (yuk). I have been seriously ill. I'm trying to stay positive, but as you all know, that's easier said than done. I haven't used any soaps or perfumes on my body for over three years. I do wear some makeup when I go out for my own sanity now. Even with restricting my diet to eliminate all foods I showed to be reacting to and not using any medication, chemicals on me or in the house in the early days after metalwork removal I was still covered in welts and swelling and it was just awful, like it was coming from inside me. The dermatologist wanted to do another patch test - um I said "no", the last lot they did to test for metal allergy left me with a couple of patches for 18 months afterwards which would not go! I will keep you informed.

[oldcrow]

my skin is thin as i take steroids for chest infections