- Messages
- 66
- Location
- Cornwall, UK.
This is a letter I have drafted up for a pending appointment with Specialist Allergy and Clinical Immunology department I am looking for any input that may assist my case or help in diagnosis I am thinking MCAS?
Multiple drug and chemical hypersensitivity?
For all of my life I have suffered with varying degrees of multiple drug and chemical hypersensitivity with episodic or cyclic, waxing and waning with varying degrees of intensity and even some proven allergies such as wasp stings and penicillin but in the last 8 to 9 years I have become much more affected and highly sensitized and even allergic/reactive to so many drugs and chemicals it defies belief. One of the best examples of my condition is “fragrance/perfume/parfum” used in so many household products such as washing powders, air fresheners, toilet cleaners and even a whiff of lady’s perfume. When I breath or smell one of these chemicals the following reactions occur firstly mucosal symptoms such as congestion and watery eyes this then rapidly moves on to a tightening of the throat and then an asthma like reaction in the lungs, fast moving skin itching and moderate headache followed by dizziness and cognitive problems such as trouble with my memory and difficulty concentrating this then moves on to adrenaline release and intense irritability and unprovoked anger (fight or flight feeling) and then cardiac arrhythmia and then total exhaustion this whole experience is a nightmare to say the least and can last sometimes for days but usually a few hours.
Here is a list of my main triggers.
· Food and drinks
· Environmental toxins
· Infection
· Cold or Hot environmental temperature
· The Sun (not the newspaper)
· Many medications and some health food supplements
· Bad smells
· Insect bites
Skin problems.
Over the last 7 to 8 years I have had episodic skin itching with a sensation like tiny insects are walking over various areas of my skin and painful scabs on my back, buttocks and the back of head that never heal. I have seen a dermatologist at Treliske hospital only to be told that I have sensitive skin and to use “Nivea” as this product apparently has the closest skin ph. level and keeps the skin hydrated. I tried to explain to the consultant that I have strong reactions to most unnatural chemical skin products like Nivea especially products with perfume but this statement was dismissed as she had never heard of anyone having a reaction to such a common product. Reluctantly I tried Nivea as told to and strangely enough I had a pins and needles type reaction with concentrated itching in the areas where I applied the Nivea but in absolute desperation I persisted for 6 months with absolutely no improvement whatsoever. It is worth bearing in mind that I have tried just about every health food shop topical lotion and vitamin/mineral supplement over the years with no improvement and even a cut or graze will take 6 months to a year to heal when 8 to 9 years ago I would heal in 2 to 3 weeks. All I can say is there is more going on with my skin than meets the eye and this undefined skin condition alone is a completely intolerable living hell and keeps my life miserable. Over the last 3 months or so I have started losing my hair at an accelerated rate.
Sun intolerance.
In the last 7 to 8 years I have acquired a heightened intolerance of direct sun this occurs only in the summer months when the sun is at its hottest usually between May and August.
The symptoms are after sun exposure of between 5 and 10 minutes fully clothed (light summer clothing) starting with dizziness and a feeling of overwhelming sickness and the desire to vomit followed by overheating, breathlessness, skin irritation and extreme cardiac arrhythmia the only thing I can do is sit indoors with a large cooling fan placed directly on me on full speed this helps. I am unable to go out in the summer months and even the warmth in the air is too much to bear. Any sun exposure leads to days of feeling ill and I am speaking as someone who used to sit on the beach every summer and enjoyed the sun for most of my life up until about 8 years ago, the reactions that I get are substantially greater and much more debilitating and dramatic than the other people that I know who have (normal) sun intolerance. In addition, I suffer with intermittent photophobia.
Intolerable itching after shower or bath and issues with drinking tap water.
Over the last 7 to 8 years I have been suffering sometimes with horrendous itching after bathing washing or showering. I have stopped having showers as this is the worst thing for my skin, I now run a bath and leave it for 15 minutes or so to let the bulk of chlorine evaporate but after the bath the water or what is in the water is frequently creating a constantly moving itching red raised rash occurring anywhere on my body not unlike urticaria or irritant dermatitis this itching can last for up to 20 hours and can also cause chest tightness, difficulty breathing, coughing, sneezing, and I have broken out in burning itching sores on my back and scalp which never heal (not healed in 8 years) and are aggravated every time I wash also I get burning watering and itching eyes. This reaction I believe could be chlorine sensitivity or aquagenic urticaria, these reactions happen more intensely when I can smell the chorine in the water and all of the symptoms vary with intensity as the chlorine varies in concentration in the tap water. I have discussed this issue with SOUTH WEST WATER and after much debate they have decided to discount my water bill as there are known issues with contaminants in the tap water. I will point out here that I only use organic liquid castile soap or similar products with no additives or fragrance. In addition, I will point out that S.W.W stated originally that what I was complaining about was a “medical condition” (it appears that S.W.W telephone operators are now medical professionals as well as scientists) and I was told by them that I should take “ANTI-HISTIMINES” well if that was possible I would but I have a very strong reaction/allergy to anti-histamines which cause itchy eyes, shallow breathing, sneezing, fast moving very itchy skin all over my body, ear canal itchiness, disorientation and extreme unprovoked anger, irritableness and a general feeling of being poisoned.
Regarding drinking tap water this gives me an extremely bloated and painful stomach with symptoms not unlike Irritable bowel syndrome, in addition I get internal and external itching which is beyond description but I can say it is extremely uncomfortable and can lead to headaches, nausea, tightening of the throat and a disturbed metallic taste sense. I have not drunk tap water for 8 years and only drink bottled spring water with no added chlorine and in my opinion, this proves to me that tap water is not suitable for me to drink as I do not get the symptoms mentioned when drinking only spring water. I did install a very expensive whole house reverse osmosis water filtration system but it did not do what the company said it would so after 18 months a full refund was given.
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis/Post Viral Fatigue Syndrome/Medically Unexplained Symptoms/Persistent Physical Symptoms/Lyme disease.
Most of my present health problems started 8 to 9 years ago with an enterovirus leading to an upper chest infection which rapidly lead on to some of the many illnesses mentioned and lots of the classic symptoms of M.E/P.V.F.S. I have been given most of the above titles at one time or another, these text book defined titles are completely unhelpful to myself and medical science as I have been diagnosed by exclusion rather than medical evidential facts, more often than not I feel that I am being dealt with as if I have complex mental health problems which is totally untrue. In addition, I am aware that the N.H.S has a procedure of not spending too much money on patients with any of the above titles, and also, I am aware that often basic medical investigations come back as negative with no real answers, and the present trend is to offer C.B.T and pacing with N.I.C.E guidelines which are totally unhelpful in my case and many others with similar medical titles. My problem with the present system is how can any medical professional tell me what condition/s I truly have without proper investigation and equally how can anyone treat someone without an evidence-based diagnosis? The danger is it is very easy to dismiss new or existing symptoms to any of the title descriptors of this paragraph.
Lung burning.
For approximately 8 years I have suffered with the most uncomfortable and frightening burning heat with a pins and needle like sensation/pain in my upper lungs this heat makes me feel very hot with profuse sweating and skin burning in the corresponding areas on my back, chest and neck particularly when I sleep. also needle like pains in the front and back of my upper chest areas. This burning often comes on with the taking of medications such as lorazepam, diazepam and proton pump inhibitors and many other drugs, also I have similar reactions to many chemicals including common household bleach, furniture polish, laundry liquid, but it can happen sometimes without any noticeable provocation.
Walking problems.
I am having increasing severe difficulty walking with varying degrees of intensity and over the last 4 years my legs, predominantly the right leg gets pins and needles and then after 10 to 20 minutes they become numb and like lumps of lead, this now prevents me from walking any distance without having to stop and recover also I cannot stand still for more than 10 to 12 minutes as my legs will become unresponsive and numb and in addition I get severe shooting needle like pain upwards from my toes which makes me shout out in pain.
Various body pains.
· Sciatic nerve compression spasms from the L4/L5 area with prolapsed discs with constant moderate to severe pain untreated due medicine intolerance.
· Episodic Migraines untreated due to medicine intolerance.
· Episodic Cluster headaches very severe pain treated with high flow oxygen after my last episode I found I was becoming intolerant of meds and they no longer seemed to work and they caused a very irregular and frightening heartbeat with low BP.
· Intermittent Cervical Spondylosis untreated due to meds intolerance.
· Continuous moderate muscle and bone joint pain.
· Intermittent intense teeth nerve pain.
· Moderate to very severe steady ache/pain in the upper right abdomen. I declined a cholecystectectomy some years ago as ultrasound scan did not detect any problems in liver or gallbladder.
I am intolerant or have more that the acceptable side effects/reactions to pain killers usually after 1st or 2nd dose of Codeine or any opiate related drugs including Tramadol, Oramorph and nsaids. Oxycodone has worked well once but when represcribed with a different generic brand I found I was intolerant, serious side effects include severe stomach pain (doubled up), cardio arrythmia, breathing problems asthma like wheezing, very bad headache in back of head, a feeling of being poisoned, tightening of throat, an intense burning in my lungs and very itchy fast-moving skin irritation these reactions are much more severe than the actual pains I am being treated for and sometimes feel life threatening and as a direct result I take no pain relief for any of my pain conditions no matter how severe and that is a living hell. Also, over the years I have tried many anti-depressants and tricyclics causing more severe side effects than I can handle. I am also intolerant of lidocaine hydrochloride, prilocaine and other dental Local anaesthetic’s causing a delayed (30 to 60 minutes later) anaphylactic like reaction followed by a feeling of being so ill that I have to go to bed for weeks until I recover and sometimes get severe trigeminal neuralgia and or cluster headache. This has been a major problem when it comes to dental work also I have problems with dental cement contents vapour which cause an anaphylactic like reaction and a feeling of being poisoned.
Food reactions.
I eat only the highest quality foods that money can buy mostly Organic, natural and unrefined products. I crave beef, peanuts, cheese and eggs. And I have very strong reactions to standard wheat-based products but find spelt or organic wheat tolerable.Other foods I have strong reaction to are: peanuts, marmite, chocolate, crisps, sometimes refrozen fish, biscuits, sometimes eggs including organic, sometimes fresh oranges but not organic,Quorn products, pork including organic, I do not touch dairy apart from organic cheese in small amounts but that can give me dramatic arrythmia, Monosodium glutamate gives severe arrythmia to the point where I have to go to bed to recover which takes around 12 hours hence I do not touch it. I never drink tea or coffee as they upset my heart big time. Also, I am very intolerant of acetic acid or sugar. My whole mouth and tongue often feels like it has been burned for no apparent reason. I get combinations of the symptoms below in lesser or greater intensity.
· Skin rash, itching
· Nausea, stomach cramps, diarrhoea, very swollen stomach
Exposure to chemicals. In my lifetime I have been directly exposed to asbestos dust, coal dust, titanium dioxide dust, and many chemicals used in the building industry now deemed as carcinogenic or unsafe. Also I have acquired a total intolerance to most paints/VOCs.
Multiple drug and chemical hypersensitivity?
For all of my life I have suffered with varying degrees of multiple drug and chemical hypersensitivity with episodic or cyclic, waxing and waning with varying degrees of intensity and even some proven allergies such as wasp stings and penicillin but in the last 8 to 9 years I have become much more affected and highly sensitized and even allergic/reactive to so many drugs and chemicals it defies belief. One of the best examples of my condition is “fragrance/perfume/parfum” used in so many household products such as washing powders, air fresheners, toilet cleaners and even a whiff of lady’s perfume. When I breath or smell one of these chemicals the following reactions occur firstly mucosal symptoms such as congestion and watery eyes this then rapidly moves on to a tightening of the throat and then an asthma like reaction in the lungs, fast moving skin itching and moderate headache followed by dizziness and cognitive problems such as trouble with my memory and difficulty concentrating this then moves on to adrenaline release and intense irritability and unprovoked anger (fight or flight feeling) and then cardiac arrhythmia and then total exhaustion this whole experience is a nightmare to say the least and can last sometimes for days but usually a few hours.
Here is a list of my main triggers.
· Food and drinks
· Environmental toxins
· Infection
· Cold or Hot environmental temperature
· The Sun (not the newspaper)
· Many medications and some health food supplements
· Bad smells
· Insect bites
Skin problems.
Over the last 7 to 8 years I have had episodic skin itching with a sensation like tiny insects are walking over various areas of my skin and painful scabs on my back, buttocks and the back of head that never heal. I have seen a dermatologist at Treliske hospital only to be told that I have sensitive skin and to use “Nivea” as this product apparently has the closest skin ph. level and keeps the skin hydrated. I tried to explain to the consultant that I have strong reactions to most unnatural chemical skin products like Nivea especially products with perfume but this statement was dismissed as she had never heard of anyone having a reaction to such a common product. Reluctantly I tried Nivea as told to and strangely enough I had a pins and needles type reaction with concentrated itching in the areas where I applied the Nivea but in absolute desperation I persisted for 6 months with absolutely no improvement whatsoever. It is worth bearing in mind that I have tried just about every health food shop topical lotion and vitamin/mineral supplement over the years with no improvement and even a cut or graze will take 6 months to a year to heal when 8 to 9 years ago I would heal in 2 to 3 weeks. All I can say is there is more going on with my skin than meets the eye and this undefined skin condition alone is a completely intolerable living hell and keeps my life miserable. Over the last 3 months or so I have started losing my hair at an accelerated rate.
Sun intolerance.
In the last 7 to 8 years I have acquired a heightened intolerance of direct sun this occurs only in the summer months when the sun is at its hottest usually between May and August.
The symptoms are after sun exposure of between 5 and 10 minutes fully clothed (light summer clothing) starting with dizziness and a feeling of overwhelming sickness and the desire to vomit followed by overheating, breathlessness, skin irritation and extreme cardiac arrhythmia the only thing I can do is sit indoors with a large cooling fan placed directly on me on full speed this helps. I am unable to go out in the summer months and even the warmth in the air is too much to bear. Any sun exposure leads to days of feeling ill and I am speaking as someone who used to sit on the beach every summer and enjoyed the sun for most of my life up until about 8 years ago, the reactions that I get are substantially greater and much more debilitating and dramatic than the other people that I know who have (normal) sun intolerance. In addition, I suffer with intermittent photophobia.
Intolerable itching after shower or bath and issues with drinking tap water.
Over the last 7 to 8 years I have been suffering sometimes with horrendous itching after bathing washing or showering. I have stopped having showers as this is the worst thing for my skin, I now run a bath and leave it for 15 minutes or so to let the bulk of chlorine evaporate but after the bath the water or what is in the water is frequently creating a constantly moving itching red raised rash occurring anywhere on my body not unlike urticaria or irritant dermatitis this itching can last for up to 20 hours and can also cause chest tightness, difficulty breathing, coughing, sneezing, and I have broken out in burning itching sores on my back and scalp which never heal (not healed in 8 years) and are aggravated every time I wash also I get burning watering and itching eyes. This reaction I believe could be chlorine sensitivity or aquagenic urticaria, these reactions happen more intensely when I can smell the chorine in the water and all of the symptoms vary with intensity as the chlorine varies in concentration in the tap water. I have discussed this issue with SOUTH WEST WATER and after much debate they have decided to discount my water bill as there are known issues with contaminants in the tap water. I will point out here that I only use organic liquid castile soap or similar products with no additives or fragrance. In addition, I will point out that S.W.W stated originally that what I was complaining about was a “medical condition” (it appears that S.W.W telephone operators are now medical professionals as well as scientists) and I was told by them that I should take “ANTI-HISTIMINES” well if that was possible I would but I have a very strong reaction/allergy to anti-histamines which cause itchy eyes, shallow breathing, sneezing, fast moving very itchy skin all over my body, ear canal itchiness, disorientation and extreme unprovoked anger, irritableness and a general feeling of being poisoned.
Regarding drinking tap water this gives me an extremely bloated and painful stomach with symptoms not unlike Irritable bowel syndrome, in addition I get internal and external itching which is beyond description but I can say it is extremely uncomfortable and can lead to headaches, nausea, tightening of the throat and a disturbed metallic taste sense. I have not drunk tap water for 8 years and only drink bottled spring water with no added chlorine and in my opinion, this proves to me that tap water is not suitable for me to drink as I do not get the symptoms mentioned when drinking only spring water. I did install a very expensive whole house reverse osmosis water filtration system but it did not do what the company said it would so after 18 months a full refund was given.
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis/Post Viral Fatigue Syndrome/Medically Unexplained Symptoms/Persistent Physical Symptoms/Lyme disease.
Most of my present health problems started 8 to 9 years ago with an enterovirus leading to an upper chest infection which rapidly lead on to some of the many illnesses mentioned and lots of the classic symptoms of M.E/P.V.F.S. I have been given most of the above titles at one time or another, these text book defined titles are completely unhelpful to myself and medical science as I have been diagnosed by exclusion rather than medical evidential facts, more often than not I feel that I am being dealt with as if I have complex mental health problems which is totally untrue. In addition, I am aware that the N.H.S has a procedure of not spending too much money on patients with any of the above titles, and also, I am aware that often basic medical investigations come back as negative with no real answers, and the present trend is to offer C.B.T and pacing with N.I.C.E guidelines which are totally unhelpful in my case and many others with similar medical titles. My problem with the present system is how can any medical professional tell me what condition/s I truly have without proper investigation and equally how can anyone treat someone without an evidence-based diagnosis? The danger is it is very easy to dismiss new or existing symptoms to any of the title descriptors of this paragraph.
Lung burning.
For approximately 8 years I have suffered with the most uncomfortable and frightening burning heat with a pins and needle like sensation/pain in my upper lungs this heat makes me feel very hot with profuse sweating and skin burning in the corresponding areas on my back, chest and neck particularly when I sleep. also needle like pains in the front and back of my upper chest areas. This burning often comes on with the taking of medications such as lorazepam, diazepam and proton pump inhibitors and many other drugs, also I have similar reactions to many chemicals including common household bleach, furniture polish, laundry liquid, but it can happen sometimes without any noticeable provocation.
Walking problems.
I am having increasing severe difficulty walking with varying degrees of intensity and over the last 4 years my legs, predominantly the right leg gets pins and needles and then after 10 to 20 minutes they become numb and like lumps of lead, this now prevents me from walking any distance without having to stop and recover also I cannot stand still for more than 10 to 12 minutes as my legs will become unresponsive and numb and in addition I get severe shooting needle like pain upwards from my toes which makes me shout out in pain.
Various body pains.
· Sciatic nerve compression spasms from the L4/L5 area with prolapsed discs with constant moderate to severe pain untreated due medicine intolerance.
· Episodic Migraines untreated due to medicine intolerance.
· Episodic Cluster headaches very severe pain treated with high flow oxygen after my last episode I found I was becoming intolerant of meds and they no longer seemed to work and they caused a very irregular and frightening heartbeat with low BP.
· Intermittent Cervical Spondylosis untreated due to meds intolerance.
· Continuous moderate muscle and bone joint pain.
· Intermittent intense teeth nerve pain.
· Moderate to very severe steady ache/pain in the upper right abdomen. I declined a cholecystectectomy some years ago as ultrasound scan did not detect any problems in liver or gallbladder.
I am intolerant or have more that the acceptable side effects/reactions to pain killers usually after 1st or 2nd dose of Codeine or any opiate related drugs including Tramadol, Oramorph and nsaids. Oxycodone has worked well once but when represcribed with a different generic brand I found I was intolerant, serious side effects include severe stomach pain (doubled up), cardio arrythmia, breathing problems asthma like wheezing, very bad headache in back of head, a feeling of being poisoned, tightening of throat, an intense burning in my lungs and very itchy fast-moving skin irritation these reactions are much more severe than the actual pains I am being treated for and sometimes feel life threatening and as a direct result I take no pain relief for any of my pain conditions no matter how severe and that is a living hell. Also, over the years I have tried many anti-depressants and tricyclics causing more severe side effects than I can handle. I am also intolerant of lidocaine hydrochloride, prilocaine and other dental Local anaesthetic’s causing a delayed (30 to 60 minutes later) anaphylactic like reaction followed by a feeling of being so ill that I have to go to bed for weeks until I recover and sometimes get severe trigeminal neuralgia and or cluster headache. This has been a major problem when it comes to dental work also I have problems with dental cement contents vapour which cause an anaphylactic like reaction and a feeling of being poisoned.
Food reactions.
I eat only the highest quality foods that money can buy mostly Organic, natural and unrefined products. I crave beef, peanuts, cheese and eggs. And I have very strong reactions to standard wheat-based products but find spelt or organic wheat tolerable.Other foods I have strong reaction to are: peanuts, marmite, chocolate, crisps, sometimes refrozen fish, biscuits, sometimes eggs including organic, sometimes fresh oranges but not organic,Quorn products, pork including organic, I do not touch dairy apart from organic cheese in small amounts but that can give me dramatic arrythmia, Monosodium glutamate gives severe arrythmia to the point where I have to go to bed to recover which takes around 12 hours hence I do not touch it. I never drink tea or coffee as they upset my heart big time. Also, I am very intolerant of acetic acid or sugar. My whole mouth and tongue often feels like it has been burned for no apparent reason. I get combinations of the symptoms below in lesser or greater intensity.
· Skin rash, itching
· Nausea, stomach cramps, diarrhoea, very swollen stomach
- Stuffy or runny nose
- Sneezing fits
- Tightening of the throat, itching in throat
- Arrythmia
- Headaches
- Asthma like symptoms
- Very moody “snappy”
- Acid reflux
- Choking feeling
- Tinnitus constantly for two years varying in intensity
Exposure to chemicals. In my lifetime I have been directly exposed to asbestos dust, coal dust, titanium dioxide dust, and many chemicals used in the building industry now deemed as carcinogenic or unsafe. Also I have acquired a total intolerance to most paints/VOCs.
