Fibromyalgia an illness of many parts, if i were a horse i would have been shot by now.
2017 the year my doctor tells me i have a degenerative spinal problem, she advises against surgery as its too risky, now i have loss of feeling down my right side and terrible numbness or pins and needles which is hard to shake. it comes and goes but is another problem which combined with the rest is very hard to live a normal life with.
PAIN.
The pain I suffer is profound chronic and widespread, it is with me every minute of every day and night, I do not get a rest from it. It can migrate to all parts of the body and vary in intensity. For me the pain can be described as stabbing shooting pain with deep muscular aching, including periods of combined throbbing and twitching at times which can prevent me from sleeping and when I was married forced my wife into another bedroom such was the duration and intensity. The severity of the pain and stiffness is often worse in the morning, after a bad night’s sleep or when I have pushed myself too far the previous day. The pain often wakes me in the night if I move position while sleeping causing long periods where I simply cannot fall back to sleep again further complicating matters, as I get even more tired but also frustrated and grumpy waking like a bear with a sore head, snappy and irritable just wanting more sleep
Aggravating factors that affect my pain include the cold weather, little or no sleep, physical and mental fatigue, excessive physical activity, anxiety and stress.
I find walking and any physical activity to be very difficult and uncomfortable as it is accomplished in pain from the very start. The only thing that allows me to walk at all is my stamina to manage and endure the pain and a good mixture of bloody minded stubbornness to get something done. I walk with the aid of a stick and without this support I am likely to fall. My walking speed is very slow and deteriorates very quickly to more of a shuffle. I need to stop and rest frequently and all too often both my stamina and ability to go on falters and I am left unable to proceed further reliant on whoever is my chaperone at the time. Indeed I very rarely go out any distance on my own now and if I do I am reliant on someone else driving and keeping an eye out for me as I am very clumsy and likely to fall especially when preoccupied with dealing with the acute pain or when exhausted from the effort needed just to walk a short way.
Hip pain, lower back pain, groin pain and chest pain
I must mention these key areas in their own right as these areas form a key constituent to the times when I am most debilitated. The hip and back pain regularly leave me breathless and unable to move and are excruciatingly painful, the levels of pain in these areas increases as my walking ability deteriorates. The groin pain is shooting stabbing pain through my groin and genitals it doubles me over and often leaves me nauseous.
The chest pain when it first happened got me a ride to the hospital in an ambulance with suspected heart problems. After a days tests being poked and prodded the radiating and shooting chest pain was attributed to muscular and not my heart. When this happens I have either bent over twisted or done something relatively simple like pick up a cushion or fallen over or stumbled. The results for me the same several days of mostly bed rest for fear of making it worse.
Fatigue
I seem to be constantly tired much more than being tired after a particular busy day or sleepless night. The fatigue I experience is an all- encompassing exhaustion that interferes with my ability to function, undertaking many activities whether social or professional. Indeed I have been told both by employment consultants and medical professionals I am unfit for work.
I seem to follow a cycle where the pain prevents me from sleeping soundly which impacts upon my sleep patterns and eventually I cannot control my ability to stay awake with uncontrollable periods of dozing, not gaining a quality of sleep to alleviate the overall feeling of being tired either.
This combined with the effects of my medication and pain killers can make me very drowsy and confines me to my home for days at a time. As a general rule I have to moderate the use of these medications sensibly in order to gain a basic quality of life. When my pain is intense and I am on my maximum allotment of pain killers I am best described as a zombie and in these conditions I cannot even focus on a television programme or maintain a coherent conversation.
This profound exhaustion also impacts upon my overall stamina in so much that I am required to take regular rest breaks whatever I am doing or get to the point where I have overdone it and suffer severe debility for days afterwards.
For example even a trip to the supermarket with assistance from neighbours friends or family will require that we have to sit in the café for me to regain a measure of strength to continue 9 times out of 10. Failure to do so will result in me pushing myself too far and a period of severe debility will be my reward afterwards. On the rare occasions I am required to go on my own or just pop in for the basics of bread and milk then it turns into a very long and laborious event indeed which tests both my endurance and willpower.
Sleep Problems
Deep sleep is something that eludes me I spend many hours awake with the pain despite feeling exhausted and ready to drop. The pain often keeps me awake and when I do settle and find a position of relative comfort further movement reignites the pain and wakes me up again. This can go on all night all too frequently and it is only with the combined effects of medication and exhaustion that I get sleep at all my body seems to reach its limit and then simply demands I sleep for a period.
My neighbours are not surprised to see lights on at all hours of the night or surprised when the exhaustion catches up with me and I am unable to get to bed simply sleeping sporadically in my chair where I am often found
Irritable Bowel and Bladder
Need i say more read between the lines and then pick the worst option.
Headaches and migraines
I regularly suffer with headaches and occasionally migraine that confine me to a darkened room and bed. When I suffer with these migraines i also get a terrible feeling of nausea that lasts for days afterwards. I am so used to getting headaches now that it is a rare treat not to have one adding to the constant pain throughout my body.
Restless legs syndrome
On a regular basis I have these uncomfortable sensations in my legs especially when sitting or lying down and simply cannot stop myself from moving about. On some occasions I also get these feelings in my arms and feet as well. Moving the affected area relieves the discomfort however, it means I find little permanent comfort and constantly move about when sitting and toss and turn in bed with the obvious disruptions to my sleep and triggering the pain making it worse. All too often without any obvious trigger I also get very painful cramps in my calf muscles which are very unpleasant.
To my knowledge and from what I have been told by my doctors Restless legs syndrome is a lifelong condition for which there is also no cure, and which may deteriorate with age.
Cognitive dysfunction (fibro fog)
Daily I suffer with short term memory loss, word mix ups and difficulties with concentration. This poses a particular risk when attempting to cook and I have learnt from a couple of very close calls where the house has been filled with smoke and the fire alarm is sounding that I cannot afford to ignore this particular problem. I thought at first I was simply too preoccupied with coping with the pain and fatigue however, both my doctor and Fibromyalgia support group have instructed me this is common problem with sufferers.
My worst examples are leaving stuffed tomatoes in the oven overnight for 13 hours and falling asleep when a chicken was in the oven for about 8 hours. On both occasions there was smoke and alarms.
Sensitivities and Allergies
Fibromyalgia can develop associated chemical sensitivities and Allergies. After an air conditioner unit whilst employed at BAE SYSTEMS discharged something into my eyes and face I developed a severe allergic response which required regular Hospital attendance and testing under the immunology consultant at Hull Royal Infirmary.
The overall conclusion to this testing was that my Mast Cells were hyper active and I could have a full allergic response to the slightest of stimuli, scratches, fumes, dusts and bites. I have been prescribed a treatment plan and medication including an adrenaline inhaler and Epi pens which gives me a 15 minute window to get to hospital for emergency treatment as my breathing shuts itself down. I cannot do anything outside of a 15 minute distance of a hospital for fear of a reaction and my home has been specially decorated with the help of the Royal British Legion to minimise allergens and their collection. I have minimal soft furnishings, wooden floors instead of carpets and a host of killing appliances for the eradication of biting insects. It has to be steam cleaned regular and even the most basic of trips from home require planning and forethought as I could react to anything.
A simple mosquito bite will have me swelling up feeling very unwell and if I get bitten several times I am confined to my bed needing close supervision until the medication can take effect or an ambulance is needed. Trusted friends will fill that requirement as required to keep me safe.
Touch wood I have not suffered a wasp or bee sting however the possibility of a severe reaction is ever present and a constant worry and many activities are missed if there are high numbers of insects and possible triggers about I simply avert anything likely to expose me to risk as I cannot afford to be nonchalant in this matter. Even if a full allergic reaction is not triggered I am still likely to react with uncontrollable itching, sore eyes, sore throat etc. ever conscious that I may require an ambulance at short notice if symptoms persist or worsen.
Dizziness
I can and do get bouts of dizziness without warning, I am sure a contributing factor is my inability to eat much when out due to my other symptoms but these spells cause me to fall and stumble and many times I am caught by however is acting as chaperone. This dizziness is also similar to a diabetic hypo in that my blood sugars crash as a result of side effects from surgery.
Arthritis
Recently after prolonged hand pain and reduced function my doctor told me I had Arthritis especially in my hands. I have arthritic bumps forming on the back of my fingers and this further restricts my abilities and increases the pain experienced, especially first thing in the morning when it can take me several hours to go from my bed to my medication reducing the symptoms so I am capable of doing anything.
Reynauds Syndrome
Just before Christmas 2009 I was diagnosed with Reynauds Syndrome. There is a history of this within my family my sister also a sufferer. My hands and feet lose their colour causing numbness and pain. Attempts to warm them when they are like this are painful and protracted my feet becoming red and sore. Prevention is the cure and to avoid medication which I may react badly too I am trying to manage my condition naturally and have taken to wearing special socks with a Tog rating, long johns, gloves and using heat packs and hand warmers.
As I react badly to the cold trips out in this weather are kept to the minimum. I have to wear gloves about the house and use blankets and quilts over my feet and legs whilst sat in the house to keep warm. I also have to utilise my heating sooner than a normal person probably would and keep it on for longer to maintain a core temperature. Obviously with my existing problems of arthritis and fibromyalgia the addition of this also can cause severe debility.
Night Sweats profuse sweating.
Both at night, post a hot drink or just walking into a warm room from outside can trigger a period of profuse sweating which I can only liken to someone pouring a bucket of water over me as every pore seems to produce moisture and soon my clothes, pyjamas and bedding if in bed are sodden with it. I go bright red feel very uncomfortable and some passers-by when out do enquire if I am alright as I must look in distress.
For me it is an awkward embarrassing occurrence and is a likely side effect of my medication.
Numbness and tingling
During my military service and since I have regularly experienced numbness and tingling in my right thigh. It was put down to trapped nerves but a clear defined area of no feeling was clearly defined by service doctors as having no pain reception when it occurred as they stuck needles in me to prove it.
Irritations and rashes
I have unusually sensitive skin if scratched a red mark will appear and linger much longer than it should. In addition I itch like mad and it is much worse if I am wearing warm clothing a hat, jacket, or in bed. I am conscious that the constant scratching can result in an allergic response at worst but I find the scratching can be more off putting to the casual observer and sometimes it proves to be a very noticeable social barrier.
Neurological Symptoms
A referral from my GP to an osteopath sought to cure the numbness and tingling I experience in my right thigh. The following was a summary of his findings
Similar symptoms to Gulf War Syndrome
One leg longer than the other
A twisted Pelvis
Sluggish greatly diminished reflexes in my upper body indicating a previous spinal injury
A number of areas of my spine that didn’t look right
Anxiety and Depression
wouldn't you be anxious and depressed sometimes with all this shit going on lol
Vision problems.
Fibromyalgia can also effect your vision and it has mine causing a deterioration in my eyesight and the requirement for new glasses. Such is the uncertainty of how, what, when my eyesight will change further that I have two separate prescriptions one for distance and one for close work with two separate pairs of glasses. It not being cost effective to invest in one pair of vari focal or bi focal glasses until my eyesight stabilises.
This has added to headache and fatigue problems and limits what I can do. Watching TV reading a book are all very tiring now and I find myself unable to enjoy either like I used to be able to.
2017 the year my doctor tells me i have a degenerative spinal problem, she advises against surgery as its too risky, now i have loss of feeling down my right side and terrible numbness or pins and needles which is hard to shake. it comes and goes but is another problem which combined with the rest is very hard to live a normal life with.
PAIN.
The pain I suffer is profound chronic and widespread, it is with me every minute of every day and night, I do not get a rest from it. It can migrate to all parts of the body and vary in intensity. For me the pain can be described as stabbing shooting pain with deep muscular aching, including periods of combined throbbing and twitching at times which can prevent me from sleeping and when I was married forced my wife into another bedroom such was the duration and intensity. The severity of the pain and stiffness is often worse in the morning, after a bad night’s sleep or when I have pushed myself too far the previous day. The pain often wakes me in the night if I move position while sleeping causing long periods where I simply cannot fall back to sleep again further complicating matters, as I get even more tired but also frustrated and grumpy waking like a bear with a sore head, snappy and irritable just wanting more sleep
Aggravating factors that affect my pain include the cold weather, little or no sleep, physical and mental fatigue, excessive physical activity, anxiety and stress.
I find walking and any physical activity to be very difficult and uncomfortable as it is accomplished in pain from the very start. The only thing that allows me to walk at all is my stamina to manage and endure the pain and a good mixture of bloody minded stubbornness to get something done. I walk with the aid of a stick and without this support I am likely to fall. My walking speed is very slow and deteriorates very quickly to more of a shuffle. I need to stop and rest frequently and all too often both my stamina and ability to go on falters and I am left unable to proceed further reliant on whoever is my chaperone at the time. Indeed I very rarely go out any distance on my own now and if I do I am reliant on someone else driving and keeping an eye out for me as I am very clumsy and likely to fall especially when preoccupied with dealing with the acute pain or when exhausted from the effort needed just to walk a short way.
Hip pain, lower back pain, groin pain and chest pain
I must mention these key areas in their own right as these areas form a key constituent to the times when I am most debilitated. The hip and back pain regularly leave me breathless and unable to move and are excruciatingly painful, the levels of pain in these areas increases as my walking ability deteriorates. The groin pain is shooting stabbing pain through my groin and genitals it doubles me over and often leaves me nauseous.
The chest pain when it first happened got me a ride to the hospital in an ambulance with suspected heart problems. After a days tests being poked and prodded the radiating and shooting chest pain was attributed to muscular and not my heart. When this happens I have either bent over twisted or done something relatively simple like pick up a cushion or fallen over or stumbled. The results for me the same several days of mostly bed rest for fear of making it worse.
Fatigue
I seem to be constantly tired much more than being tired after a particular busy day or sleepless night. The fatigue I experience is an all- encompassing exhaustion that interferes with my ability to function, undertaking many activities whether social or professional. Indeed I have been told both by employment consultants and medical professionals I am unfit for work.
I seem to follow a cycle where the pain prevents me from sleeping soundly which impacts upon my sleep patterns and eventually I cannot control my ability to stay awake with uncontrollable periods of dozing, not gaining a quality of sleep to alleviate the overall feeling of being tired either.
This combined with the effects of my medication and pain killers can make me very drowsy and confines me to my home for days at a time. As a general rule I have to moderate the use of these medications sensibly in order to gain a basic quality of life. When my pain is intense and I am on my maximum allotment of pain killers I am best described as a zombie and in these conditions I cannot even focus on a television programme or maintain a coherent conversation.
This profound exhaustion also impacts upon my overall stamina in so much that I am required to take regular rest breaks whatever I am doing or get to the point where I have overdone it and suffer severe debility for days afterwards.
For example even a trip to the supermarket with assistance from neighbours friends or family will require that we have to sit in the café for me to regain a measure of strength to continue 9 times out of 10. Failure to do so will result in me pushing myself too far and a period of severe debility will be my reward afterwards. On the rare occasions I am required to go on my own or just pop in for the basics of bread and milk then it turns into a very long and laborious event indeed which tests both my endurance and willpower.
Sleep Problems
Deep sleep is something that eludes me I spend many hours awake with the pain despite feeling exhausted and ready to drop. The pain often keeps me awake and when I do settle and find a position of relative comfort further movement reignites the pain and wakes me up again. This can go on all night all too frequently and it is only with the combined effects of medication and exhaustion that I get sleep at all my body seems to reach its limit and then simply demands I sleep for a period.
My neighbours are not surprised to see lights on at all hours of the night or surprised when the exhaustion catches up with me and I am unable to get to bed simply sleeping sporadically in my chair where I am often found
Irritable Bowel and Bladder
Need i say more read between the lines and then pick the worst option.
Headaches and migraines
I regularly suffer with headaches and occasionally migraine that confine me to a darkened room and bed. When I suffer with these migraines i also get a terrible feeling of nausea that lasts for days afterwards. I am so used to getting headaches now that it is a rare treat not to have one adding to the constant pain throughout my body.
Restless legs syndrome
On a regular basis I have these uncomfortable sensations in my legs especially when sitting or lying down and simply cannot stop myself from moving about. On some occasions I also get these feelings in my arms and feet as well. Moving the affected area relieves the discomfort however, it means I find little permanent comfort and constantly move about when sitting and toss and turn in bed with the obvious disruptions to my sleep and triggering the pain making it worse. All too often without any obvious trigger I also get very painful cramps in my calf muscles which are very unpleasant.
To my knowledge and from what I have been told by my doctors Restless legs syndrome is a lifelong condition for which there is also no cure, and which may deteriorate with age.
Cognitive dysfunction (fibro fog)
Daily I suffer with short term memory loss, word mix ups and difficulties with concentration. This poses a particular risk when attempting to cook and I have learnt from a couple of very close calls where the house has been filled with smoke and the fire alarm is sounding that I cannot afford to ignore this particular problem. I thought at first I was simply too preoccupied with coping with the pain and fatigue however, both my doctor and Fibromyalgia support group have instructed me this is common problem with sufferers.
My worst examples are leaving stuffed tomatoes in the oven overnight for 13 hours and falling asleep when a chicken was in the oven for about 8 hours. On both occasions there was smoke and alarms.
Sensitivities and Allergies
Fibromyalgia can develop associated chemical sensitivities and Allergies. After an air conditioner unit whilst employed at BAE SYSTEMS discharged something into my eyes and face I developed a severe allergic response which required regular Hospital attendance and testing under the immunology consultant at Hull Royal Infirmary.
The overall conclusion to this testing was that my Mast Cells were hyper active and I could have a full allergic response to the slightest of stimuli, scratches, fumes, dusts and bites. I have been prescribed a treatment plan and medication including an adrenaline inhaler and Epi pens which gives me a 15 minute window to get to hospital for emergency treatment as my breathing shuts itself down. I cannot do anything outside of a 15 minute distance of a hospital for fear of a reaction and my home has been specially decorated with the help of the Royal British Legion to minimise allergens and their collection. I have minimal soft furnishings, wooden floors instead of carpets and a host of killing appliances for the eradication of biting insects. It has to be steam cleaned regular and even the most basic of trips from home require planning and forethought as I could react to anything.
A simple mosquito bite will have me swelling up feeling very unwell and if I get bitten several times I am confined to my bed needing close supervision until the medication can take effect or an ambulance is needed. Trusted friends will fill that requirement as required to keep me safe.
Touch wood I have not suffered a wasp or bee sting however the possibility of a severe reaction is ever present and a constant worry and many activities are missed if there are high numbers of insects and possible triggers about I simply avert anything likely to expose me to risk as I cannot afford to be nonchalant in this matter. Even if a full allergic reaction is not triggered I am still likely to react with uncontrollable itching, sore eyes, sore throat etc. ever conscious that I may require an ambulance at short notice if symptoms persist or worsen.
Dizziness
I can and do get bouts of dizziness without warning, I am sure a contributing factor is my inability to eat much when out due to my other symptoms but these spells cause me to fall and stumble and many times I am caught by however is acting as chaperone. This dizziness is also similar to a diabetic hypo in that my blood sugars crash as a result of side effects from surgery.
Arthritis
Recently after prolonged hand pain and reduced function my doctor told me I had Arthritis especially in my hands. I have arthritic bumps forming on the back of my fingers and this further restricts my abilities and increases the pain experienced, especially first thing in the morning when it can take me several hours to go from my bed to my medication reducing the symptoms so I am capable of doing anything.
Reynauds Syndrome
Just before Christmas 2009 I was diagnosed with Reynauds Syndrome. There is a history of this within my family my sister also a sufferer. My hands and feet lose their colour causing numbness and pain. Attempts to warm them when they are like this are painful and protracted my feet becoming red and sore. Prevention is the cure and to avoid medication which I may react badly too I am trying to manage my condition naturally and have taken to wearing special socks with a Tog rating, long johns, gloves and using heat packs and hand warmers.
As I react badly to the cold trips out in this weather are kept to the minimum. I have to wear gloves about the house and use blankets and quilts over my feet and legs whilst sat in the house to keep warm. I also have to utilise my heating sooner than a normal person probably would and keep it on for longer to maintain a core temperature. Obviously with my existing problems of arthritis and fibromyalgia the addition of this also can cause severe debility.
Night Sweats profuse sweating.
Both at night, post a hot drink or just walking into a warm room from outside can trigger a period of profuse sweating which I can only liken to someone pouring a bucket of water over me as every pore seems to produce moisture and soon my clothes, pyjamas and bedding if in bed are sodden with it. I go bright red feel very uncomfortable and some passers-by when out do enquire if I am alright as I must look in distress.
For me it is an awkward embarrassing occurrence and is a likely side effect of my medication.
Numbness and tingling
During my military service and since I have regularly experienced numbness and tingling in my right thigh. It was put down to trapped nerves but a clear defined area of no feeling was clearly defined by service doctors as having no pain reception when it occurred as they stuck needles in me to prove it.
Irritations and rashes
I have unusually sensitive skin if scratched a red mark will appear and linger much longer than it should. In addition I itch like mad and it is much worse if I am wearing warm clothing a hat, jacket, or in bed. I am conscious that the constant scratching can result in an allergic response at worst but I find the scratching can be more off putting to the casual observer and sometimes it proves to be a very noticeable social barrier.
Neurological Symptoms
A referral from my GP to an osteopath sought to cure the numbness and tingling I experience in my right thigh. The following was a summary of his findings
Similar symptoms to Gulf War Syndrome
One leg longer than the other
A twisted Pelvis
Sluggish greatly diminished reflexes in my upper body indicating a previous spinal injury
A number of areas of my spine that didn’t look right
Anxiety and Depression
wouldn't you be anxious and depressed sometimes with all this shit going on lol
Vision problems.
Fibromyalgia can also effect your vision and it has mine causing a deterioration in my eyesight and the requirement for new glasses. Such is the uncertainty of how, what, when my eyesight will change further that I have two separate prescriptions one for distance and one for close work with two separate pairs of glasses. It not being cost effective to invest in one pair of vari focal or bi focal glasses until my eyesight stabilises.
This has added to headache and fatigue problems and limits what I can do. Watching TV reading a book are all very tiring now and I find myself unable to enjoy either like I used to be able to.
