Sorry in advance for the lengthy message, but I want to make sure I get all the details in! I am male, 31 years old, 6ft 3", always been very active through football, swimming, running and resistance training. I am a social drinker, non-smoker, non-drug user. Before my recent problems I had generally been in very good health throughout my life, aside from my current symptoms below I have always suffered with chronic sinus congestion and hayfever.
Basically my current symptoms are:
- Pain/irritated/stiffness in sacrum and hip joints. Pain and discomfort is felt deep into the buttocks as well.
- Faint urge to pass stool even when I know I don't need to, pressure sensation on rectum. Passing stool temporarily relieves symptoms.
- Pressure sensation against bladder, urinating seems to temporarily relieve symptoms.
- IBS type symptoms in lower gut - chronic bloating, even when stomach is empty, cramps (rarely), sometimes spasms, no constipation or diarrhea.
- Pain in testicle area, often as a sharp pain when a sudden movement is made. Pain felt in sacral area at same time. During ejaculation I feel irritation in the sacral area and buttocks.
- My lips often have a white coating on them, yeast infection? The doctor says it isn't candida, but is it something similar? Related to digestive problems?
I have been aware of the above symptoms for well over a year now and are worse when I am at work, possibly due to increased stress levels. I work in an office and I find it very difficult to concentrate on anything other than the pain and discomfort! Standing is slightly easier, I am most comfortable when lying down and am completely relaxed. Exercise seems to relieve the symptoms temporarily, and relax the sacral area and hips - especially when swimming.
The doctors say they cannot find anything wrong with me anymore (see below for my recent medical history) but I am in quite a bit of pain and discomfort, its driving me mad and getting me down, it has got to the point where I don't want to socialise because I just feel so uncomfortable and in pain, it is very distressing and embarrassing.
Aside from regularly visiting my GP, GU clinic, and a very unconcerned gastroentologist, I have also been to have acupuncture, seen an osteopath, chiropractor and a massage therapist. The hands on approach has provided temporary relief for a day or so but no-one has got to the root of the problem. I have been told I have a lot of muscle tension in my hip and sacral area, and am doing specific stretches everyday to help with that, along with pelvic floor exercises. I am also waiting to see a rheumotologist.
Is it possible that I have a nerve problem somewhere in the sacral area that are causing the symptoms I currrently have? Or is it something more sinister like a herniated disc or still the reactive arthritis? What action should I take and can it be resolved?! Please can someone advise me on what to do as I am running out of ideas, I don't want to keep living like this!! Thanks.
MEDICAL HISTORY 2006 - PRESENT
At the end of 2006 I visited the doctor and was eventually diagnosed with Reiters syndrome (reactive arthritis). I was experiencing urinary discomfort and high frequency (infection) and painful ejaculation, with low volume, watery semen. I had an inflamed prostate, was constantly tired and had severe conjunctivitis. All of these symptoms occurred within a few months of each other and continued throughout 2007. By the end of the year I was making progress physically but still seemed to be having continuing problems on a milder scale. I also suffered depression after work problems and relationship issues so was put on antidepressants for a few months at the start of 2008. I was mainly taking Doxycycline for the Reiters but I cannot remember the name of any other medications now.
At the start of 2008, I came out of the depression and noticed my lower back area was aching a lot and my bowel movements had also become uncomfortable and was constantly bloated with pale stools. Thinking back I may have had this for longer than I realised but other symptoms seemed to overshadow this. Exercise seemed to relieve the symptoms so I continued exercising to help, but it would always return quickly. I just put it down to the Reiter's syndrome and put up with it as I believed it would clear in time as this is what I had been told.
During my blood tests in 2008 I was told I also have Gilbert's syndrome and was told it is nothing to worry about. But apparently (after my own research) it is a liver disorder, and may contribute towards my ibs symptoms as it affects digestion and lowers immune system, also I seem to feel tired more than I should with spells of lacking concentration, this could also be influenced by Gilberts! This is hereditory so I have always had it but maybe the Reiter's illness
has made it worse? Please someone help!!
I saw your posting from a couple weeks ago in ehealth forum. You might wasnt to check out the low oxalate diet. I have had a great deal of your symptoms and got some relief from the low oxalate diet. Problems with oxalates tend to be triggered by having a "leaky gut" and it tends to attack areas of your body that have been injured in the past.
Here's info from the Yahoo group, trying_low_oxalates:
"This group is set up for those wanting to explore the low oxalate diet, and will offer information and support on how to implement this diet and other methods of lowering oxalates.
Oxalates are present in much higher quantities in some foods compared to others. This becomes more of a problem when the gut is leaky, because higher quantities of oxalates will be absorbed from foods.
The body also makes oxalates. In some conditions, like vitamin B6 deficiency, and because of genetic defects in certain enzymes, or because of oxidative stress, or in some types of bowel disease, and in cystic fibrosis, the body will make or absorb too much oxalate.
Excess oxalate may lead to kidney stones and problems with oxalate crystals forming in other organs. These crystals form much more easily in tissues that are injured when they are exposed to oxalates and this may cause pain. A diet restricting high-oxalate foods or other foods that are metabolized into oxalates may be helpful to reduce these problems.
People who have tried the low oxalate diet have noted improvements in areas that are not discussed in detail in the medical literature, so part of what we want to do on this list is learn things that can inform the work of oxalate scientists. By sharing our experiences with this diet in various conditions, we will learn more about all the possibilities of what will change on a low oxalate diet.
Certain foods are very high in oxalates: spinach, other greens, most soy products, most berries (especially raspberries) and many other fruits, most nuts, grains, beans, most teas, chocolate, most whole grains (although the grains without the covering can be consumed in lower quantities), coffee, and most root vegetables (potatoes and beets especially).
If you have a "leaky gut" and consume a great deal of oxalates in your diet, you have a high chance of suffering the kind of pain you describe. People with Celiac Disease frequently have a leaky gut and major pain issues. Have you been checked for Celiac Disease as yet? My cousin had problems for years, but was just diagnosed with CD 4 months ago. She started on the gluten free diet, but was not seeing any relief from pain as yet. I had not heard about her diagnosis until two weeks ago. I recommended the low oxalate diet, but I'm not sure if she tried it yet. Good luck.
I have ankylosing spondylitis -- suspected Reiters Sydrome as a result of salmonella poisoning early 1997. I too had bouts of depression -- it is difficult to go through normal daily routine when you're in pain and no one understands it. I had similar arthritis symptoms, gi sx. I started taking Enbrel injections 50mg a week (you do it yourself at home) and it helps the pain a ton! I am getting my gallbladder removed next month, due to chronic cholecystitis, which may be due to the whole reactive arthritis thing as well. Best wishes to you, I'm hopeful you'll get the help you need:) Jen