Can too much of a Good Thing be Bad for You?

Can too much of a good thing be bad? This expression can be used in relation to so many things like food or drink or money. But can it be used for attitude or say positivity or inspirational examples in life. We certainly seem to be focusing a lot on being positive, reading quotes that highlight good and positive and indeed inspire us to promote holistic wellbeing. Along with quotes and memes that tell you to be better, be stronger, be smarter, be more thoughtful, be more and more and more of everything. Do not give up, dream bigger and set goals and strive to move onwards and upwards. I, myself, like to see these quotes and put them up in my social media. I choose them very randomly – just what catches my eye and strikes a chord with my mood that day.

However, something always holds me back from putting up too many positive inspirational ones as I feel they are not realistic for some people like me. Let me clarify this point of view. I am chronically ill and have been so from 11 years now. I have connective tissue disease that is autoimmune disease. It is a multi-faceted disease where the body has turned on itself and so there is random inflammation of connective tissues with no pattern or predictability. The disease is insidious and slow to progress and therefore diagnose which took two and half years. While the doctors were doing wait and watch things went downhill. I reached rock bottom when I was unable to even lift my eyelids without excruciating pain.

The way up from that mire of pain, lack of sleep and depression only started when I actually started proper treatment. Oh I had tried all the natural therapies and supplements, acupuncture, gentle exercises, push through the pain and it will all be better therapy, do not lose hope and think positive thoughts to get back into the healthy frame of mind, mind over matter, prayers and so on. I wanted my old life back. I wanted to be able to work and earn as I had since the age of 18. I wanted to go for holidays and complete my PhD. All this also produces stress and has adverse effect on the autoimmune issues.

Once the treatment started I had to get to the stage of acceptance of the reality. Acceptance is a hard won battle and it leads to asking yourself what quality of life is acceptable to you? It is true that some people go into remission but you still have to focus on small goals to reach an acceptable quality of life. I thought this over carefully and even discussed it with my husband and we settled on issues that were important – to be self-caring, able to do the house work, be able to go out to the shops, occasional outings for fun were the goals. The cold weather did not help as for some unknown reason I found it hard to handle the cold I used to enjoy before so warm weather was something I needed. Family issues of illness and deaths added on more stress. A solution we came upon was to move to a warmer place and reduce relationships’ stress by the move. Moving itself is one of the major stressors but for the eventual good outcome I pushed through this upheaval. After the move the next thing was should I work but we decided that not working would be more stress reduction. At the same time my medication was upped and the whole journey to getting stable took another 4 years after diagnosis.

Going back to can too much of a good thing be bad – the acceptance and stability in health was along road and hard fought. I was poodling along nicely helping others and working with them to adapt as this I saw was the way to dealing with long term illness and having self-worth. All of us need to feel valued and wish to contribute to society and I had to find ways of doing so. 

On and off I see write ups about people who have overcome adversity, ill heath, disability and even death bed to achieve goals that would have been almost impossible. While I am happy for people who have done this and would give high praise to survivors of all kinds it suddenly makes you question all the decisions you have taken. Should I have not given up work? Should I have done something different and got into another profession? Am I not a strong person for I appear to have chickened out of the whole upbeat do the best and more to get back to being a ‘productive’ person? Do others perceive me as a quitter? All these ‘good’ ‘positive’ achievement stories have shaken my self-belief that I am doing the best I can. 

Being stable as it is, raises self-doubt about the extent of the illness. I only have to try reducing any of my medications and the symptoms come creeping back telling me remission is not my fate. And still these positive stories make me sad and uncomfortable with myself and yes almost a failure for not being able to be this ‘strong’ person. I guess my cycle to grieving was not over and will never be over as small things can take you back……..to the start… rebuild my self-worth and self-confidence. So YES too much of a good thing – as in positive stories, positive and inspirations quotes and well-meaning advice – is a bad thing for me.

Inflammation: an engine in the Journey of UCTD

So what is happening in my body on this Journey of UCTD? As I have said in the earlier blogs and in the ones about allergies, the body has the ability to recognise something as foreign and attempts to get rid of it. The allergen gets attacked by the white blood cells and produces an inflammatory response. This process is called inflammation.  Thus the inflammatory response takes place when there is injury to the cells from micro-organisms, any physical or chemical agents as well as those perceived as foreign in the body.

Physiology of inflammation

Inflammatory response is the body’s natural defence mechanism. It protects by neutralising and destroying any toxic substances. It helps to limit the spread of these toxins to other parts of the body and restore homeostasis. There are 4 main characteristics of inflammation – redness, swelling, heat and pain. If inflammation occurs over a part that is involved in mobility then it also will cause restriction or loss of mobility of that part.  

When injury occurs, and in case of UCTD the injury is caused by the damage to connective tissue which is not recognised as self, a number of changes take place to form the inflammatory response. The site will release substances like histamine and bradykinin. Histamine is released from any injured cells that contains it as well as by in response to the chemicals produced by neutrophils (a type of white blood cell). Bradykinin is help to attract neutrophils to the site of injury. There is also an increase in the production of chemicals called prostaglandins. These prostaglandins are potent vasodilators and they enhance the effect of histamine and bradykinin.

These chemicals increase dilation of the blood vessels causing more blood to flow into the area. This gives redness to the area. It also increases the permeability of the blood capillaries allowing fluid and defensive substances to ooze out into the extra cellular space of the surrounding tissues. This causes the swelling seen in the inflammatory response. The defensive products are white blood cells and clot forming chemicals. The white blood cells will destroy any micro-organisms, damaged tissue and foreign substances. The increased blood supply also helps to remove the toxins and dead cells from the site. A clot forms around the site to prevent the micro-organisms and its toxins from spreading.

Another response by the body is to increase metabolism and heart rate so that blood can reach the injured site quickly. The warmth at the site of inflammation is due to the warm blood gathering in the area as well as increased metabolism. The other symptom, pain, occurs due to the irritation of nerve endings by the toxic chemicals and due to pressure caused by the swelling. Prostaglandin also intensifies and prolongs the pain caused during inflammation. The bradykinin also causes the intense pain by affecting the nerve endings. I will discuss pain in more detail in another blog.

Lastly the loss of function or mobility can take place if this inflammation is over or near a joint, its tendons and ligaments.

What does this mean in UCTD?

Once we understand what normally happens in the body as a defence then we can understand what happens in UCTD. Within this autoimmune disease which has not differentiated into any specific kind, the entire body’s connective tissue is open to having an antigen – antibody response. This means there can be injury due to this antigen-antibody response and inflammation will result. So from the realms of general body defence we move to understand the specific body defence.

What is Immune response?

When the resistance is specific to a disease or organism then it is called immunity. When a particular antigen (organism or protein) enters the body and it is recognised as foreign, the body will produce an antibody specific to that antigen. Mostly antigens are proteins of some kind, nucleoproteins, lipoproteins, glycoproteins and some large polysaccharides. With regards to bacteria the flagella, the wall and even the toxins can be the antigen, but non microbial kind varies widely, from pollen, egg white, nuts, oils, perfumes, incompatible blood cells to transplanted organs.

Antibodies are formed against specific sites on the surface of the antigen. Generally antigens are substances that are not usually part of the body. The body has the capacity to recognise itself and so only substances that are ‘non self’ will stimulate antibody production. Need I point out that this is where things go haywire in UCTD? The body cannot differentiate between self and non self, and thinks the connective tissue is an antigen!

The antibody produced is also a protein that is able to combine with a specific antigen. The collective name for antibodies is immunoglobulins as the antibodies are made of proteins called globulins. There are 5 types of immunoglobulins – IgG (increases phagocytosis, neutralizes toxins and protects foetus and new born), IgA (provides protection on the mucosal surface), IgM (effective against microorganisms), IgD (stimulated the antibody production) and IgE (participate in an allergic reaction). These also can be not recognised by the body and can produce antibodies of its own.

When the antibody attaches itself to the antigen, it forms the antigen-antibody complex that the body will destroy and remove. When the antigen happens to be ‘self’ then it will produce an inflammatory response to this perceived injury to its tissue. 

So where is this connective tissue in the body?

Connective tissue is formed by cells and large amount of intercellular matrix and extracellular elements. It forms the framework, connecting, supporting and packing tissue in the body. There are 6 types of connective tissues:

Tissue with cells floating in a fluid matrix – Blood.

Tissue with cells in a semi-solid matrix – mesenchyme, found in embryo and subsequently gives rise to all other connective tissue. 

Tissue with cells in semi-solid matrix with a fine network of reticular fibres in the extracellular space. The tissue forms a 3 dimensional framework for organs such as spleen, bones and lymph nodes. The cells within are capable of ingesting particles, that is they are phagocytes.

Tissue with cells in semi-solid matrix with thicker collagenous and elastic fibres. These are 5 types –

·        Loose Fibrous tissue which form the packing between organs, sheaths of muscles, nerves and blood vessels.

·        Dense Fibrous tissue which is strong and inelastic but pliable and is found in ligaments, capsules of joints and heart valves.

·        Elastic tissue is strong, flexible and extensible and found in blood vessels and air passages.

·        Adipose tissue contains fat and forms a protective cushion around the organs as well as function as an insulating layer in the skin.

·        Tendon is tough and formed by inelastic cords of dense fibrous tissue that allows muscles to be attached to bones.

Tissue with cells in solid elastic matrix with fibres – cartilage which is also of 3 different kinds-

·        Hyaline cartilage which is firm yet resilient and us seen in air passages and ends of bones at joints.

·        White fibro-cartilage is tough but resistant to stretching and found between vertebrae where it acts as shock absorber.

·        Elastic or Yellow fibro-cartilage is more flexible but resilient and found in larynx and the ear.
 
T   Tissue with cells in a solid rigid matrix which is impregnated with calcium and magnesium salts – bone, which forms the rigid framework of the body.

Making sense of UCTD

Now you can connect all three sections – connective tissue, immune response and the process of inflammation and it will give you a fair understanding of what is happening to the body in an autoimmune disease. When specific connective tissue involvement is there, it gives a particular pattern of symptoms and changes to blood constituents and so categorised to a particular autoimmune disease. However, luckily or unluckily, within Undifferentiated Connective Tissue Disease there is no specific pattern or blood changes and so does not allow a specific diagnosis. It is almost as if the body has not decided on which parts are not self. The symptoms fluctuate randomly between various symptoms and so we say that the disease has not differentiated itself. 

One must not assume that the title reflects the inability of the medical profession to make a diagnosis. It is actually a disease in its own right and pretty difficult to pin down as there is no pattern of either the symptoms or of blood and body changes. However, the inflammatory response is seem pretty strongly and can comprise of the whole body. You can look back at the symptoms I have described in the previous blogs to make sense of the pathophysiology of this disease. The medical profession do take a long time to make a diagnosis not only because the investigation results fluctuate but also it takes time for the disease to develop and most would rather wait and see than label the disease immediately. About a quarter of the patients are likely to achieve remission and be disease free. About a quarter will develop and differentiate into one or 2 specific diseases over 5 years. The rest will remain in the undifferentiated category.  

The Gut also comes on the Journey of UCTD

A while back I wrote about allergies and their impact on the gastrointestinal tract. It links in right here as the gut does not get left behind but demands its own compartment in this Journey of UCTD. All the things that happen due to food allergies can happen here as well. If you intend to feel upset about the graphics descriptions of the effects may be this blog is best left unread.

Well the gut can get inflamed as a result of the autoimmune disease. The gastrointestinal tract is made of involuntary muscles. From my earlier blogs you must have sussed that my muscles have been affected by this disease and so is it surprising that I am having GI symptoms too?  Now the first time I ready ever thought about the impact was when I had difficulty in swallowing. I found that it took a bit too long for that well chewed morsel of food to actually pass down the throat. In fact, I could actually feel it slide slowly and often painfully down the oesophagus. This was particularly noticeable when the drink was very cold or hot. Sometimes it felt as if the bolus had stopped in transit and I was thumping my chest to get it moving. As if the blocked pipes get unblocked with a thump? But when your eyes are watering due to the pain and your breath stops, you try even the silliest thing. This was making me feel reluctant to eat and drink. This does not bode well for the body that is being pumped with ibuprofen and bouts of steroids. 

The other thing that happened during this time was a tendency to get constipated. Was this due to lack of adequate fluids and fibre?  Well, I told my rheumatologist and GP about this and next thing I know I am being trotted off to the gastroenterologist. He is not ready to discuss differential diagnosis at this point but suggests that we can go for a gastroscopy and see what is happening. It would help to visualise the state of the mucosa, biopsy the walls and check for coeliac disease. He opined that all my problems could be just part of coeliac disease. So I agreed to undergo this investigation. 

When you get a date with the scope there is some preparation for it. Not as extensive as scoping the other end but still, a nil by mouth overnight. I could take my pills with very little water at 6 am as I was due to be on the table at 10 am. I had an option to be sedated or not for the procedure. Having chatted about this with a friend, I was told it was better not to be sedated as you can help by voluntarily swallowing when the scope was being introduced. Well hindsight is always 20 / 20 and I will never advice anyone to refuse sedation. In fact I would have been very happy if I had been anaesthetised for it. 

I do not think I was totally relaxed as when that mouth guard is inserted you suddenly realise it is hard to swallow with your mouth open. You are lying on your side facing away from the TV screen. I am even denied that small entertainment. Then the gastroenterologist (one who I had never met before) says I am going to spray some local anaesthetic to help numb the mucus membranes. No one tell you that it stings like hell before the numbing can take place. Also that numbing does not mean total loss of sensation. I have been at the other end of this scoping business and remember telling the patient its ok, it is a small scope and fairly thin. But on the receiving end it seems to be more like a drainpipe! Needless to say that this was one procedure that had me sobbing and I wished I was asleep through it. I wanted to yell – I am trying and what do you think I am doing? When the nurse / doctor kept saying swallow, a bit more…. 

I think it only lasted about 30 mins and that’s how long eternity was, for me. I was asked to get dressed and wait outside while the nurse rang my husband and asked him to collect me. If I was hoping for some sympathy, it was in short supply as he was working nights and had to come get me in the middle of his sleep. My throat was sore for a few days. The initial report was that the gut looked good especially considering the hefty doses of ibuprofen being pumped in daily. A couple of weeks later the gastroenterologist told me that coeliac disease has been ruled out after all.

During this waiting period I had developed anaemia and also diarrhoea which can be attributed to the ibuprofen, reduced vitamin B 12 and also the new medication of hydroxychloroquin (Plaquneil). 

  The alternative reason of diarrhoea also related to the food allergies, particularly since some days my husband worked 12 hour shifts, we relied on frozen meals. I was given Vitamin B12 injections and you may have already read my saga about taking iron. I wish one could just lick some rust off the nails. The issue of this being a side effect of plaquenil was very real and dealt with by antihistamine. Actually I needed the antihistamine for the rash that I got after starting plaquenil, and noticed that it helped to control the diarrhoea too. 

So when I saw the gastroenterologist for the results of my gastroscopy, he was concerned about the low Hb and diarrhoea. Since he did not find anything in the upper GI tract, he wanted to do a colonoscopy. His explanation was we just might find the reason for your illness; maybe you have a bleed somewhere which is causing your anaemia, may be you are not absorbing the nutrients as you should. But naturally I will not be absorbing nutrients if I am having the runs. I do not see any blood fresh or otherwise to indicate any bleeds. I think I shocked the young registrar by refusing to get a colonoscopy done on a whim or a vague idea that this might just provide us with a diagnosis. I said I would prefer to wait and see how I respond to the Vitamin B12 injections, iron and antihistamines before I decide to opt for colonoscopy. 

Part of the decision was based on the fact that I had a poor experience of gastroscopy and did not relish the idea of being awake through yet another invasive investigative procedure which might turn out to be just a fishing expedition for the lads. Since then I have had iron injections too and my ferritin levels are back to normal. I am careful in what I eat to ensure I keep allergic reactions to a minimum and having cetirizine / zyrtec daily keeps the side effects dampened down.

Since I have got stabilised, well sort of, I have noticed that just as with other organ systems I tend to have cycles for the GI tract too. I get periods of normal, then slowing of the gut movement when I can have swallowing difficulty, feeling full and slow stomach emptying to being constipated. Then the pendulum swings back and everything speeds up. I do feel a bit hungrier as the stomach empties quicker. I also tend to have a bit of diarrhoea on the days I have to take methotrexate but it is all mostly manageable. So result – no one has asked me to go for a colonoscopy!

It's Cold on this Journey of UCTD

Oh the winter is here and my bones feel the cold. I am not sure if I mentioned this before, in my Journey of UCTD, but since this illness the temperature control switch has been flipped in my body to default. I grew up in India and was used to the heat. So when I went to UK I had to learn to get used to the cold weather. After many years in UK I was more comfortable in the cold weather. Indeed going to a warm country for holidays meant that I needed a fan or even AC should the temperature go over 25C. Since I got ill I cannot tolerate the cold. When the temperature hits 20C I am looking for my fleece and winter woollies. In the last few years in UK I was more or less permanently cold. I wear thermal long johns and 3 layers of clothes on top, a woolly hat, and ear muffs, gloves and of course a few socks. I must have a touch of Raynaud’s as despite this level of wrapping up and even heating going, my feet, hands and nose could be icy.

Here in Oz, I find that heat is comfortable, indeed I do not break out into a sweat till the temperature goes above 30C. We live in an old brick house and the thick walls keep the house pretty cool in the summer heat and but even colder in winter. It did not help to have an open chimney in the lounge. It let the cold / heat in but also the wind and rain. It would be pointless having a heater on as I would be heating the rest of the town as well. I would have hot water bottle in bed and the heater on in the bedroom for a few hours and even so my feet would warm up only after a couple of hours. I have been known to wear the fleece and woolly hat plus socks in bed.

In summer, the temperature indoors would go up to 30 C but then it was about 40+ outside. Now the good thing about this house is the back veranda, one can sit and bask in the sunshine all day during winter. One day I decided that sitting in the sun, sipping tea, reading a book and warming my toes would be beneficial. So I removed my socks and sat with my toes in the sunshine….waiting for them to warm up. A couple of hours later I find that my feet have not warmed even an iota but my skin is well tanned and indeed even burnt! So I had to apply some cooling aloe gel on the already icy toes. I was not a happy bunny.

This year the chimney has finally been closed off and I can tell the difference. I am cold but not in pain due to the cold as often as I was last year. I have also pulled out more of my UK winter woollies to layer the clothing. The recent development is pain in the finger tips which comes and goes and is usually in one finger at a time. While my hands and feet are cold they do not change colour as it can happen in Raynaud’s.  So I guess I have to count my blessings and now I am just resigned to having cold feet, hands and nose through the winter months. I do try and go out for a walk in the park when it is a sunny day and that feels good, outside is definitely better. But winter days and rain means just being cold. If you remember I did have a long bout of anaemia too and when you are all the time tired and not moving about a much you tend to feel colder. Once the cold gets into the bones the pain is not far away from the bones, muscles and cartilages. This is a vicious cycle as when in pain immobility increases. Exercising even a little bit helps to warm the muscles and generate heat. 

Well I had started out to talk about something totally different but since it is cold and slightly grey I got drawn into this as… yes you guessed it…. I am cold. I even considered investing in a balaclava to keep my face warm. Indeed there was a talk among my support group that you can buy nose warmer or nosebags as I call them. Sometimes I do put my ear muffs such that they cover my nose and warm it up. I also tend to have lots of hot drinks, mainly tea and cuppa soup for lunch. With having so much tea the sugar intake was going up and so had to change my habit and go without sugar in the tea. So now I can drink loads of tea without feeling guilty. I also occasionally have some nettle tea as an alternative taste. Hot soup is good but there are few cuppa soups I can have as many have additives in them that I am allergic to. There is only so much minestrone and French onion soup one can drink and after 2 winters of it I have hardly touch it so far this year. It does not help when I tend to forget to eat. Like now, I just realised it is lunch time and I have not had my porridge yet, just couple of cup of tea. Right I will have something now and talk about the GI issues another day or else I might develop some right now.