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For years I struggled with Lupus SLE until I eventually helped myself and now I want to help others also living with Lupus. To date, I have tried various treatments, herbal remedies and loads of praying. After many years I finally found relief from a combination that worked for me and there’s no indication that lupus (or anything else!) will prevent me from reaching my goals! I strived hard to get over my illness and have succeeded. I now hope that my story will help you to overcome your illness and make you a stronger person.
You only have a cold!
After an intense summer completing GCSE’s, studying yet lacking in concentration I somehow got through my exams. I had initially felt unwell but put it down to exam stress. Once the tension of the exam was over, instead of feeling elated I began to feel very weak and getting flu like symptoms.
I lost my appetite. Gradually I started to struggle to move my limbs, I was unable to turn my head as my neck was rigid and painful. Even then, in those weeks I just thought I have a really bad cold. When one week had passed and it seemed like I was getting worse, my mum pushed me to pop to the doctors for a check-up. They found nothing.
Tests but no results
2 weeks passed with no answer to why I was unwell, the only answer I had was that I might have just caught an awful cold. After being misdiagnosed a few times I had finally given up and sat at the doctors helpless and really just wanting to go home to bed and sleep. I made a number of appointments for the doctors, each time being tested for something else, and every time the results came back negative. They tested me for various conditions including arthritis, but nothing was found and the symptoms progressed. All I was given was antibiotics and then some more antibiotics, apart from the fact that they were killing my appetite they also made me feel awful.
Carrot fingers eventually leads to an answer
5 weeks had passed, and by now sitting down was ruled out as my joints were stiff, even bending down was no longer a possibility. I had to ask for help in picking up things, as my wrists would not take any weight. At school, I was unable to sit in assembly cross-legged so ended up using the chair. It was frustrating when someone asked what was wrong and I would not have an answer. On my final appointment, I had decided I could not be asked to go through the hassle just to be turned away. This would be my final visit. My doctor apologised for not being able to help. Thinking back now, it was by the will of Allah I was saved.
As I got up to leave and I cannot clearly remember, either I was unable to turn the knob of the door or I was going to open the door and the doctor stopped me asking to see my fingers. On seeing my fingers, she said that they resembled carrots. The first thought in my head was that she had lost her marbles. Second thought was why would someone ever wants their fingers likened to carrots. I was sent for a special blood test after which I received a call 2 days later, in which my doctor was really worried as I had been diagnosed with Lupus (SLE), an autoimmune disease.
She was concerned as my lupus had progressed quite extremely and there was a risk my kidneys or other lungs might have been damaged. Alhumdolliah after extensive testing, I was found to be one of the lucky ones, despite having severe symptoms I had managed not to have any internal parts damaged. Now for someone that was suffering from chronic fatigue, joint pains, muscle aches stiffness, swelling shortness of breath, chest pains, headaches, skin rashes and even sunburns I did not feel I had got the better end of the deal until I was older. Gradually I realised I should be grateful to have managed to avoid anything that would have damaged me internally. I was also just relieved to know that I had not incurred a lifetime cold that had no cause or solution!
By the way, I never did find a link to carrot fingers and SLE/Lupus, so I always think it was Allah helping me out!
What is SLE/Lupus?
Lupus is a condition whereby the body’s immune system goes into overdrive and starts to attack itself. The results for this disease came back negative eventually. However, it is an illness which is very hard to diagnose due to its ability to mimic so many other diseases. Funnily, I was later diagnosed with Mixed connective tissue disease so instead of just Lupus, SLE and a mixture of other illnesses. MCTD has signs and symptoms of a combination of disorders — primarily Lupus, Scleroderma and Polymyositis. For this reason, mixed connective tissue disease is sometimes referred to as an overlap disease. In mixed connective tissue disease, the symptoms of the separate diseases usually don’t appear all at once. Instead, they tend to occur in sequence over a number of years, which can make diagnosis more complicated.
Early signs and symptoms often involve the hands. Fingers might swell like sausages, and the fingertips become white and numb. In later stages, some organs — such as the lungs, heart and kidneys — may be affected. Although the former occurred with me, Alhumdollilah Allah protected me from the lethal second stage of this. My symptoms had also progressed to extreme fatigue, depression, hair loss, and a facial rash. It’s funny that they call this the ‘butterfly rash’ because of its shape. My Rheumatoid Specialist put me on some tablets (steroids) to help prevent flare-ups and gave me an anti-inflammatory, which seemed to help keep the swelling down. I was also put on co-codomol, a codeine-rich tablet that becomes quite addictive.
As the time went by I would continue to live my life as normally as I could. Stiffness and swelling became a daily cycle. The flare-ups would get worse and the medication would increase. Appointments at the doctors sometimes became a weekly affair, so that blood tests could be carried out the measure the activity of the illness, and to make sure that I did not get to a dangerous level of anaemia, or some organ of mine did not get damaged. I would go through different stages after finding out that I had the disease, sometimes I would try and read as much information as I could and get mad, and other times I would get depressed about it and try and forget that I ever had it.
Feeding on Steroids, Codeine, Weight Gain and Depression
Steroids made my life hell, it was bad enough trying to get used to the pain and learning to live with it. It came packaged with another illness called Raynaud’s Syndrome. Raynaud’s is usually triggered by cold temperatures, anxiety or stress. The condition occurs because your blood vessels go into a temporary spasm, which blocks the flow of blood. This causes the affected area to change colour too white, then blue and then red, as the blood flow returns. You may also experience numbness, pain, and pins and needles. I often got teased and likened to what a dead body would eventually look like. My fingers looked like the blood had seeped out and they were lifeless.
To top this all off my body was becoming like a body builder’s, I had become so fat I could no longer stand to look at myself in the mirror. I would exercise like crazy, 1-2 hours a day with no difference in my body weight. Nothing would work. Although I had support from family yet no one seemed to understand I could not get rid of the weight due to the medication. Out of depression and anger I finally just started coming off the steroids without telling anyone and I started losing weight quickly which made me slimmer but it had a cost! The mixed connective tissue came back with a vengeance, luckily this time I caught it in time and began taking the steroids again. I was told I would have to increase my medications even more, by this point I had admitted that I had stopped the medication. I also had to admit that I had started over-dosing on the codeine to get rid of the pain.
I was taking way above the recommended amount of medication just to ensure that I could keep the pain in control. I spent years ‘yoyoing’ between acceptance and depression. The weight gain was the worst part as self-confidence tends to go down the drain, especially when you don’t feel very confident about your looks in the first place. I would always think that people were staring at me. People would make comments that if I went on a diet and worked out appropriately I would lose the weight. It would anger and frustrate me that they knew nothing about how much effort I was constantly putting in but seeing no results.
Eventually, I just learnt to block everything out. For a long time I gave up and I just ate whatever I could get my hands on. So whatever weight I might not have gained, I gained because I was eating junk just to get away from the pain of not being able to lose the weight. I would take painkillers in the hope of getting away from stress and any anxiety which meant that I was effectively becoming an addict. No one at home seemed to realise because it was easier to think I was fine and I was coping. I just learned not to say anything. What made it worse was that the medications themselves had other side effects, there would be times I would hallucinate, I would end up with a round face, exceptionally dry skin, dizziness horrible migraines, the co-codomol made me sleepy, it was like being in a cycle with no way out.
Taking back control of my life!
I came to the realisation that things were not going to be as easy as I wanted them to be. I was due to start university and I had taken an extra year out in which I did an extra a-level and took a break from everything. In this year I decided I needed to get some control back in my life, therefore I began to research and research as much as I could. I got a list of herbal remedies that worked, fish oils everything. I began to experiment as well as continue to exercise. I found that if I did not exercise I would end up fatigued and my joints stiff. So exercise was a regular routine for me. I started to make lists of tablets to trial and herbal remedies. From ground turmeric to rhodiola rosea, I must have tried everything under the sun. At the same time, I was taking the steroids, anti-inflammatory drugs as well as co-codomol!
One thing I had come to accept was I could not risk coming off the medication, but I could complement and top up with all these other herbal remedies. Finally, I found herbal remedies that were working in combination with exercise. I was Exercising at least 4-5 times a week and taking the following supplements:
- Omega 3 fatty acids in capsule form: Fish oil supplements (EPA+DHA) can curb stiffness and joint pain. Omega-3 also seem to boost the effectiveness of anti-inflammatory drugs.
- MSM: A well-researched benefit of MSM is that it helps decrease joint inflammation, improves flexibility and restores collagen production. Research shows that many patients with arthritis, joint pain, stiffness, knee/back problems and a limited range of motion experience a reduction in symptoms and improved quality of life when taking an MSM supplement. MSM supplements are beneficial for helping the body form new joint and muscle tissue while lowering inflammatory responses that contribute to swelling and stiffness.
- Glucosamine: This helps delay the breakdown of cartilage as well as rebuild it. Combined with Rose hip extract which contains polyphenols and anthocyanins, which help to ease joint inflammation and prevent joint damage.
- Vitamin C, which has antioxidant properties. Antioxidants are substances that can override harmful molecules (free radicals) which are produced within your cells and which may cause tissue damage or disease.
- Marine chondroitin: reduces pain and inflammation, improves joint function and slows progression of osteoarthritis.
- Vitamin D regulates the amount of calcium and phosphate in the body. These nutrients are needed to keep bones, teeth and muscles healthy
All these supplements were difficult to get from one place as I needed products that were gelatine free (or halal) which meant I had to buy from 3 different places, in 2004 there were not too many companies providing gelatine free capsules! Gradually I started to see the effects of these tablets and realised there is LIFE with this Yes…your methods of getting things done change plus your way of thinking changes too. Each day is a new experience and with that, it can give you hope that you can do anything that you want. Having an illness does not mean that you can no longer have a life. Of course, this is how I felt on the good days.
Trying to stop medication
I went to see my consultant. He was pleased with my progress and surprised that I had not developed any other further illnesses. Steroids can lead to diabetes, I could have ended up with high blood pressure, kidney. I already suffered from and still do suffer from really low white blood cells which can often mean I ended up with a severe infection. Thankfully apart from one bout of a severe infection and an attack of the chickenpox which was potentially going to be fatal I managed to do quite well and avoid most infections. See, you learn to appreciate the important things in life!
I asked my consultant if I could cut down the steroids and he was a bit cautious, he suggested started with a tiny amount and then going from there. Over the next few months, I began cutting the steroids down gradually. At the next consultant meeting, I did mention cutting the medication down further but he refused and said to me it was too risky. I did not think at this point it would be a good idea to inform him that I had already cut down to about half the amount. Especially when I was having some flare-ups. I increased my glucosamine and MSM strength and waited for a few months. The swelling went away and the stiffness was reduced so I continued to decrease the steroids further slowly. I went for regular tests and appointments and my doctor said to reduce the medication further. By this point, I had actually stop taking steroids. I asked him about supplements but he said that they were not going to make the problem go away although they might help some, he was not convinced. At this point, I thought it was best to keep quiet about my amazing success with supplements. I thought telling him that I had stopped taking the steroids nearly two weeks ago was not a good idea. After a few months had passed I knew that I was ok and that I did not need to take the steroids. I was still on the co-codomol and the inflammatory drugs but the steroids were out of my life and thank God my weight was coming down! (though not for long as I would develop something else!)
I did speak to my doctor again and I tried asking him again what would happen if I stopped them and just used herbal medication to which he replied that this might not be a good idea right now and that I should wait a few more years. I finally admitted to having stopped the steroids nearly 3 months ago which shocked him. This led to another set of routine tests, which came out clear and managed to shock him quite a bit. So over the next couple of months I had tests but they were ok. Do not get me wrong I would get my good days and bad days, but I have not had flare ups in a long time now. My white cells can drop down quite a lot, but then I eventually just stopped the anti-inflammatory which tend to effect white blood cells. Strangely they are still quite low and I seemed to have avoided infections quite well alhamdulillah.
My hands still get painfully cold and then pain can be unbearable, its literally like having your fingers getting cut open by the cold and your thinking ability goes down the drain. But I am a lot of the time pain-free and can get on with all my regular activities. Unfortunately, I am still fighting to get rid of my addiction to co-codomol which has been hard as it became my problem solver when I was in pain, when I was down when I had a bad amongst other situations. However, mentally I think I have become a lot stronger, illnesses generally tend to make you stronger as you become a fighter without realising. Of course, you don’t fight then really your just giving up and letting it beat you. It was brilliant to be able to research But amongst it all I think I was blessed by Allah to have had a lucky escape, trials and tribulations are a part of life intended to make us stronger and I hope that what I have told you today helps you to draw inspiration.
The point of this story is to encourage people to investigate alternative treatment, to educate themselves about the benefits of thorough investigation and to question their doctors. And as a society at large, we should look at the ever-rising health care costs, emphasis must be put on prevention of illness and acceptance of natural medicinal alternatives. Western treatments can sometimes put the fire out, but they don’t get to the root of your symptoms and stop the problem. As a result, the war rages on and an illness continues to smoulder its way through the body. I believe that many people with lupus and autoimmune diseases would be helped tremendously if research was done and doctors backed it up as a valid for of alternative treatment.
Please feel free to leave comments, let me know your highs and lows and how you overcame them!