Saturday, 18 May 2013

My Fibromyalgia Symptoms

Today's post I am going to go into depth about my symptoms and how Fibromyalgia really does affect me on a daily basis. Most people I know haven't heard of Fibromyalgia and those who have think you just have some pain here and there but nothing too bad. So I thought I'd explain the extent of my condition and hopefully others can relate as I know every single person with Fibromyalgia has different severity and different symptoms.

Be warned this is a very long blog post!

This is the best diagram I have found that explains all my symptoms:
(bearing in mind I am a girl, so some of these symptoms will only apply to females)

I will use a scale to show how much the symptom affects me using ticks ().
meaning not so much
meaning a lot

I am also going to explain other illnesses I have that are caused from Fibromyalgia:
Hyper-Mobility Syndrome
Chronic Fatigue Syndrome
Irritable Bowel Syndrome

Pain ✓ - I suffer with chronic widespread pain all over my body. There is not a day where I am not in pain in some part of my body. The pain is in my joints, muscles and ligaments. However Fibromyalgia does not cause damage to them or mean there is anything wrong with them, they just hurt. The best way to describe the pain is as if I've done a very vigorous workout and it's the aching/hurting pain you get the next day, however it never goes away. The pain moves around my body, so one day my knees may be the worst so I struggle to walk/stand but the next my arms might be the worst and picking things up or carrying will be difficult. So just because I can do something one day, doesn't mean I can the next.

Weight Gain  - It's only started to be a problem for me the last two years. I haven't changed my diet and I've been unable to exercise since I was 13 (I'm now 20) but my weight has changed a lot in the past two years. I do blame a lot of it on my body turning into a woman but I went from 8st to just over 10st in two years. As this is quite a lot in a short time for no real reason my doctor does seem to think it may be linked to my Fibromyalgia or my medication. I have to watch what I eat every single day as if I put anymore weight on I'll struggle to loose it as I can't exercise properly to burn it off.

Cold Symptoms  - This is one of the symptoms I struggle with the most as it affects me all day, every day. I always have the symptoms off a cold minus the runny nose and sneezing. Every day I have a fuzzy head, tickley/sore throat, aching/tingling all over my body and no energy at all. It makes everyday things so hard because it never goes away. At least colds actually go after a few days.

Sensitivity ✓ - I have a few sensitivities to things. The first one is a Chemical Sensitivity. I have an intolerance to alcohol. It causes food poisoning like symptoms after I have any amount and no I'm not hungover or a light weight (sick of them 'jokes'). If alcohol comes into contact with my skin it also causes redness and itching. I also have to be careful when taking certain medications as it can also cause me problems. I also suffer with Light and Sound Sensitivity. Light can cause the back of my eyes to ache and give me a headache. Even if it's not sunny I have to have my visor down in the car or sunglasses on.  I am very sensitive to sound, especially base or high pitched. It can give me an instant headache if too loud. 

Chronic Headaches  - I suffer with headaches on a daily basis, they range from minor to severe and quite often migraine. This is normally due to my other symptoms such as cold symptoms and light and sound sensitivity. 

Fatigue ✓ - As well as Fibromyalgia causes fatigue, I was also diagnosed with Chronic Fatigue Syndrome. This is just a very extreme case of fatigue. It is common for a lot of people to be diagnosed with this illness but for most normal people it is only temporary due to them being very busy or run down and will go away. However for me it is always there. Fatigue is also a very hard symptom to cope with. I wake up everyday feeling as though I've had no sleep and could do straight back to sleep for another 12 hours. I never wake up feeling refreshed or energized. However fatigue isn't just tiredness, it's a lack of energy. Some days I can't get out of bed or do the simplest tasks. It can make day-to-day life very difficult if I have lots to do. 

Cognitive Impairment ✓ - Cognitive impairment is a big symptom that no one really understands until you experience as it's very hard to explain. A common name for it is 'Fibro Fog' as it just feels like your head is full of fog. I struggle to concentrate and to think. Sometimes the easiest of questions are hard to answer if I can think straight. I have an awful memory and constantly forget things. It can also sometimes cause dizzy spells where I just have to sit down for 10 mins because I can't get my balance or go to feel faint. 

Anxiety and Depression ✓ - I wouldn't say this is a symptom of Fibromyalgia but it is caused from having Fibromyalgia. Being is constant pain and feeling chronically ill with no real help can be so upsetting. Especially as I've had it since I was 13 and all it's done it get worse from them. Myself and Doctors can't seen my condition getting better anytime soon which is a very daunting thought as I probably will have this condition for the rest of my life.

Muscular Problems ✓ - This comes back to the pain as my muscles is where I feel most of my pain. However as well as pain, my muscles also feel weak. I am so weak and struggle to carry or lift things. Some of it is down to my lack of exercise but a lot of it stems from the Fibromyalgia. I struggle to lift the easiest of things e.g. Kettle, Pans and even a handbag some days. I also suffer with muscle twitting, this could just be a big twitch every now and again which can sometimes be painful. Or they could be a spell of twitches where a particular muscle will sort of spasm and twitch constantly for a while which can leave my muscles so achey and sore.

Joints  - My joints don't affect me as much as my muscles. It's only really my main joints that can affect me e.g. knees, elbows and hips. Every now and again my hip can feel as if it's about to come out of place but this feeling doesn't last long. A common symptom of Fibromyalgia is morning stiffness in joints but luckily I don't really suffer with this as I also have a condition called Hyper-Mobility Syndrome which means my joints bend more than they should which contributes to my joint and ligament pain. This stops my joints from getting stiff but can often cause more pain. 

Urinary ✓ - I am very prone to Urinary Tract Infection's (UTI) and they can come at any time. My ticks would be a lot high for this if I hadn't started to get them under control. I have started drinking plenty of water and making sure I have a glass of water before bed. If I don't have a big wee in the morning I will get a UTI. Quite often they have also spread into my Bladder and Kidneys which is an awful infection.

Digestive System ✓ - I suffer with a lot of indigestion so I have to eat very slow and always have a packet of Rennies in my handbag. I also have nausea most days where I just feel queezy. It can be after food of because I'm hungry but I do quite often feel sick for no reason. I also have a condition called Irritable Bowel Syndrome which my Fibromyalgia causes. This causes chronic abdominal pain, discomfort, bloating, and alteration of bowel habits. And as horrible as it is, it does cause a lot of wind which can cause discomfort if it becomes trapped. 

Dysmenorrhea ✓ - This to me is just a very posh word used for very bad periods. I have rated it as a 3 for the pure fact it only happens once a month. Sorry men I know you probably don't want to be reading this but I told myself I'd be honest and say all the symptoms I suffer with from my Fibromyalgia (and hopefully other women can relate). I have suffered with very painful and heavy periods since I started. I used to have to have days off school due to the pain, so my doctor tried to regulate them with the Contraceptive Pill since I was 13/14. However my doctor now thinks that they are linked to my Fibromyalgia as period pains are the muscles inside a females reproductive system working. Fibromyalgia can cause women to have more painful periods because Fibromyalgia pain can affect all muscles including your reproductive system ones. I am dreading giving birth if this is the case. I asked my doctor for the implant as in most cases it stops periods all together, but he fears that for me it may do the opposite and make them irregular and more common. 

Chest Pain ✓ - Before I was diagnosed with Fibromyalgia I was rushed to hospital a couple of times with severe chest pains, to the point where I was nearly passing out and the pain would spread to my back, up my neck and down my arms. Which of course I used to go into panic mode and think I was having a heart attack or a stroke. I was diagnosed with Costochondritis which is severe chest pains. The pain occurs down the center of my chest and in between the ribs. I have this pain on a daily basis but as I know it's not dangerous I don't panic so much now. It causes me to have an irregular breathing pattern. For a normal person, when they breath in their chest will expand and when they breath out their chest will deflate. For me due to the pain in my chest and ribs, I pull my chest in when I breath in because taking a deep breath causes the chest pains to be worse. This means I don't take in enough oxygen and makes my breaths very short and often. I was given breathing exercises that I do at night before bed to try and help improve the length of my breaths and to make my chest go in and out the normal ways.

Skin ✓ - I don't often suffer with skin problems but I can occasionally get an unexplainable rash on my arms and legs. Nothing Hydro-cortisone cream doesn't sort out. However the rashes can get quite itchy

Joint of Jaw ✓ - I suffer a lot on a daily basis with the joint in my jaw. It is constantly very painful when opening and closing my mouth and can make opening my mouth wide very difficult at times. However my Hyper-Mobility does enable me to put my fist in my mouth if I'm having a good day with my jaw. Eating can sometimes be very painful, especially if the food is chewy as it'll cause pain. I often suffer with my jaw locking or feeling like it will pop out of place. This is a horrible feeling as I panic when my jaw locks that it won't go back. After reading numerous blogs, forums and websites, problems with the joint in the jaw is becoming a very common symptom of Fibromyalgia.

Eyes ✓ - I have worn glasses since I was a very little girl (thanks to my dad's brilliant genes!). However Fibromyalgia can cause my eyes to go quite blurry sometimes which plays havoc with my eye prescriptions as it can make my eyesight worse for a short time but then next time I go to the opticians it'll be better. So I have to keep on top of my optician appointments and contact lense prescriptions. 

Anti-Depressant Side Effects  - I take Anti-Depressants not because I am depressed but because they help my Fibromyalgia symptoms. I am on a type called Venlafaxine which is an Anti-Anxiety type normally used to treat depression, anxiety, panic and phobia. I use it because it can help block the pain signals from the brain and ease my pain. It also helps relax me before bed as I can get quite tense and worked up if I am in a lot of pain. However it does cause some very nasty side effects. I am on a fast releasing form so when it nears the time of day to take them again they start to wear off. When this happens I suffer with what I call 'brain zaps' because they literally feel like electric zaps in my brain that shock down my body. They cause cognitive impairments and exaggerate my 'Fibro Fog'. Once I have taken my dose again these ware off. However if I miss a dose they are unbearable and I won't be able to get out of bed. Another side effect I suffer from the Anti-Depressants is involuntary jaw movement. Luckily I don't look like I'm gurning but it causes my jaw to clench which causes pain and makes the joint in my jaw a lot worse. It can also cause a lot of tooth ache so I have to be very conscious of this side effect and often have to try and hold my teeth apart. 

That concludes my Fibromyalgia Symptoms. I apologise for the very lengthy post, but I did warn you at the beginning. I would love to know if anyone else suffers with similar symptoms and problems or if there are any different symptoms anyone else has.

I wanted to do this post as May is Fibromyalgia Awareness Month and Sunday 12th May was National Fibromyalgia Awareness Day. I used Facebook, Twitter and Instagram to try and promote the awareness day and hopefully help spread the word to people that haven't heard of the illness. 

There is a lot of speculation from Doctors as there is no tests or scans that will show Fibromyalgia, which makes diagnosis very difficult. Also it causes some Doctors to not even believe in it. I experienced a lot of this when trying to get diagnosed as a lot of Doctors believed I was making it up because they couldn't see the illness, it must not be real. But I can tell you it is very real!!

Unless you have experienced the pain and symptoms of Fibromyalgia, you will never understand. This is why it's caused the Invisible Illness because you can't see that someone has it. Awareness needs to be raised to help increase support so that more research will go into the illness. America is miles ahead on research for Fibromyalgia than in the UK because more people suffer with it due to the larger population which means that more people needed answers, facts, treatment and help. This needs to happen in the UK.

As purple is the ribbon colour for Fibromyalgia, I decided to buy a purple bracelet.

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