Question from London, United Kingdom:

I’m 42, female, slim and have type 1 diabetes that was diagnosed eight years ago. My blood sugars are quite well controlled now but have been up and down a lot in the past.

Three years ago, in the summer of 2001, I started to get ill. I had always been very robust, fit and well before this. I should also say, and stress, that I am quite tough and very stoic, can withstand more pain than most people and am particularly bad at making a fuss or complaining.

The first symptoms were bad low back and leg pains deep into the bones, joints and muscles. My muscles are often sore to the touch and the pains will keep me awake or wake me. I also started to get very tired. I had low abdominal pains, too. In the autumn of 2001, I started to have all over, generalized skin pain that felt like severe sunburn. There is nothing to see but clothes brushing against my skin exacerbates the pain. Early in January 2002, I started to get severe diarrhea, anywhere between 10 and 30 times a day. The tiredness was now exhaustion and very low energy. I eventually saw a gastrointestinal doctor, had a whole load of tests and procedures, special diets, etc., without any answers. My blood sugars were all over the place as it’s almost impossible to keep them stable when diarrhea is that bad. My other symptoms were being ignored.

In late 2003, early 2004, the skin pain went away. When it returned, it was worse than ever and has become progressively worse with the addition of sudden but regular, localized sharp stabbing, cutting, prickling, shock-like burning that often feels as if it goes much deeper than my skin. These pains can be short or long and happen anywhere but are much worse and more often on my trunk, particularly my back, though the chest is pretty bad too, especially on my ribs. The skin pains are at their worst from the afternoon onwards and I’m in complete and utter agony in the evening and trying to get to sleep.

The diarrhea stopped in the spring of 2004 as mysteriously as it began. The pain is intolerable and will stop me from sleeping. My periods have been irregular to the point of missing for about two and a half years, one every six months on average. My hormones tested fine. For two years now, my fingers are almost always cold to the point of pain. They are cold right now and the heating is on. This cold thing has gotten worse in the last year so that my thighs and arms get cold easily, also, to the point of pain and I take forever to warm up. My chest and back feel cold too, although if I’m out walking, and I do walk quite fast, my fingers, legs and arms could be freezing and painful but my trunk is hot and I’m sweating!

I feel very weak generally and very regularly have bouts of what feels like fever. I shake very badly and often my whole body is shaking, not just my hands and I spill drinks or can’t pour liquids or hold a knife or fork because my arm won’t be still. More recently, I stopped peeing properly, with some retention, but also now a strange smell, not horrible, just strange. My skin often itches badly though I’m told that it could be the painkillers that are causing this, even though the itching only started really badly about eight months ago. Now, I often get constipated.

I have, in the last couple of months, not eaten very much though I love good food and have always had a good, reasonably healthy diet. I eat very little now with very few proper meals. I just don’t feel like it. I get an uncomfortable feeling of fullness easily. I take 60 mg of codeine once or twice a day for the back and leg pains and abdominal pains. I switched to tramadol recently and found that they take longer to work than codeine but are better and have a longer effect when they do. I stopped them a while back as I figured out that they were the cause of some rather unpleasant side effects. I’ve now started to take them again but, not all of the time. I alternate them a bit with codeine. I have hardly ever had to take painkillers in the past and I don’t like doing it now. I try to take them as little as possible, but they are the only things that work. They have no effect on the skin pain. My back and legs have been checked and are fine structurally; there’s a little bit of small nerve fiber damage but not enough to account for the pain I’m in. These last and other tests have only happened in the last year since I have had to become more insistent about wanting some answers and treatment.

My diabetes specialist put me on gabapentin two weeks ago to try to get rid of the skin pain, though they are not convinced that it is diabetic neuropathy. So far, the pain is still bad. I have practically no life and, in the last year, even less of one. I can’t work and can hardly get to the local shops even once a week. Others have to do all the chores. In the last six months or so I’ve had a couple of very short periods, two to three weeks, where the skin pain has subsided and I’ve had slightly more energy and not felt so generally ill. I cannot account for these. It’s very hard trying to get doctors to do anything when one is so incredibly ill. This is quite an irony to me. I appreciate that they have now done a good range of tests, but I’ve only seen a gastrointestinal doctor so far, although my diabetes specialist has consulted with an endocrinologist. A CT scan showed no “Omas” or other sinister things and a gut hormone test was negative. Some of my blood tests were not quite on the mark as it were, but nothing that anyone seems bothered with. My liver tests are slightly elevated, showing what they think is a fatty liver. This has been put down to diabetes, even though it only showed this after I started to get ill three or more years ago. It irritates me that so many doctors want to dismiss anything and everything as caused by diabetes.

So, has anybody out there got any ideas whatsoever? I have a couple of ideas of my own but would rather not influence people.