What type of fibro are you?

[Tipnatee N]

For a very long time I'm struggeling try to figure out why are there so many different type of pains that many fibro sufferer experiences?. Some fibro sufferer I don't share any common with at all, while some I share far too many.

Can we categorize our symptoms ? Which type of fibro pains would me or you fallen in to? How big how small , how much , and how serious? It felt like fibromyalgia has been lump up together far too many symptoms it no longer making any sense to me to think any doctors can attempt to fix it all in one go. How could that even be possible exactly?

For me ( just me ) I have broken it down to just 4 main problems that I can link all my pains and any of my other suffering side effects to.

Here are my most major notorious "type of fibro" that I'm fallen in to.

1. Sleep disorder : I'm have a full on Non-24 sleep wake disorder , and all kinds of sleep disorder except not yet apnea . My other sleep disorder are including RLS , sleep disturbance, insomnia, irregular sleep, sleep paralysis, vivid dream , etc. I'm also sometime experiencing mild narcolepsy like sudden sleep that causing by sudden emotional trigger like anger or anxiety.

2. Sensory processing disorder ( SPD) : All my senses are completely out of sync. From too sensitives , to too little or non-existing. From sense of touch, sound, smell, taste, sight, balance, temperatures, pains, other internal senses . And it could get super freaky when proprioception sense is come to play , but that because fibro fog are one bigest contribute side effects of my SPD , not to mention my other side effect such as hyperesthesia, paresthesia, and Allodynia . Which I'm mostly suffering every single day beside the typical aches and pains that I still have at the moment including daily vertigo .

3. Mentally disorder: I have MDD, which is still a kind of mentally disorder. My MDD side effect comes with Panic/hyperventilation attack which can strike almost everyday and comes in many different degrees. It has its own brain fog like a miss placing objects or informations. Sometime seeing or remembering words and numbers differently , I also have agoraphobia, enochlophobia , claustrophobia, and many other phobia.. never know what would be next which most of these phobia came along after my fibro. I'm even starting to have fear of hight which I've never scare of hight before ever in my life ! But now I am thanks to my SPD. Not to mention hellucination that comes in varieties of color , shadows , sounds. Mostly thanks to my deficiency problem below.

4. Deficiency problem : My body daily depriving me of many vitamines and minerals such as potassium, calcium, magnesium, iron, selenium, and some others no matter how healthy I feed my self . My IBS problem also cause by deficency problem which also causing my yoyo weight effects problem, and so on. My terrible side effect are often hallucinations. It can be annoying or scary and terrifying at the same time beside many many fibro pains and fatique symptoms. It can easily escalate everything above list from the top and worsen during mixing with SPD or sleep disorder such as awaken from sleep paralysis, etc.

Everything can be link together or holding their own. And these are what I call my type of fibro. I don't believe that many people have all my type of fibro , cause everyone are different.

So what type of fibro are you?, what are your major categories that you are suffering in?

 

[diamond]

For me just all over pain and weakness that has increased and spread over the years.

Onset 2007/2008 deep all over aching and stiffness plus some joints badly affected to point some times it was hard to weight bear or walk far other times pretty good by my understanding of fibro....so i could maybe walk 40 minutes or an hour then need to stop and rest.

2009...tinnitus started...very loud like a school or office fire bell sometimes so loud even over the TV...a bit quieter level at times but also set off with different screeching noises by silly things like dropping a spoon or someone using parcel tape .

2009 I had to give up driving due to fibro pain flaring so severely each time...to point it was a choice driving or walking and doing things i needed to do like looking after my house and garden.

At the same time i got this thing where i have shapes and images in bright vivid coming at me when i close my eyes or in the dark...like im under attack from a kaleidascope.......a bit like i can imagine tripping on drugs ( i watched a video of exactly this online and its what i get) except id never taken any drugs! not even for pain at this point and it started the same day as the tinnitus..so clearly some sort of brain dysfunction.

2010 Some thing called interstitial cystitis started and vulvodynia....basically severe pain in your bladder, lady parts, bottom pelvis pubic bone urethra and thighs....burning throbbing stabbing pain and sometimes needing to wee 30 times a day and night too with constant pressure and pain not just when you wee.

The same year i got burning mouth syndrome....same kind of thing.... burning nerves in your mouth tongue and throat. Also started with TMJ disorder...pain in the jaw limiting chewing and speaking ...how wide i can open my mouth, sometimes barely at all and loosing strength in my voice so it goes hoarse frequently and i get a raw throat and swollen painful glands with it.

2013 Migraines started along with the jaw pain reoccuring worse after a dental check up.

2014/15 All the above became permanent and almost always severe to point i went from pretty active..out 2 or 4 times a week albeit with my partner driving and carrying things and doing all my house work and proper cooking just slower and with rest periods..... to mostly struggling to stand long enough to brush my teeth get a shower or make simple meals or talk much.

My days became hot water bottles on my body ..ice on my head and face....and trying to exercise by doing laps of my large living room as and when i can push myself. Sitting for a while became a luxury i have to fight to tolerate.

So all types of pain burning stabbing throbbing and all over weakness are my main fibro problems.

Now also mental activity like reading and making decisions is draining and exacerbates all over body pain where as it wasn't before 2015.

Also sensitivity to noise and smells especially chemicals like house hold cleaners or things in the garage or shed!

Nausea and dizziness and loss of balance now frequent companions.

Interested to hear other peoples stories.

 

[Lubkos way]

There is a reason for the different symptoms that us fibro sufferers have.I have struggled to explain it,and the medical community with all their science,education and brain power are no closer to a hypothesis that makes sense.I believe that the reason is that,it is an auto-immune illness and the reason is that the science has not caught up yet in being able to pick up the markers that show its presence.The geniuses have been trying to treat the symptoms,and are incapable to see the big picture.The fact is that,every persons' immune system is as original as a person's DNA.No two people are alike.80% of our immune system is in our digestive tract,and there is 150 million strains of bacteria and 100 million strains of viruses,billions of each,totaling a trillion or more combined.Can you imagine the combinations possible?Ever wonder why all fibro folks have IBS?Quite simply put,I believe this is the reason why we all have different symptoms.Any thoughts?

 

[diamond]

Although i have always personally thought its our limbic system and the HPA axis responsible for most of our dysfunction i have also read more about gut health recently being in part responsible.

I know i was always a healthy eater and my digestive issues and stomach pain started after antibiotics which generally i would avoid like the plague lol well maybe not if needed to treat the plague!

I do wonder if we all actually have a different version of a whole range of unknown conditions rather than the umbrella term fibromyalgia...we are all genetically different and all have wide and differing range/level of symptoms.

Maybe we should all sign up for our brains and bodies to go to science and research once we pass over....that's if anyone wants us!

Treating symptoms is not the answer but right now the best the medical profession can do....we have to start taking the best care of ourselves the minute we have symptoms.

I truly believe the quicker we recognise we are sick and take a fully holistic approach....stress reduction...care from our families and employers ....as much exercise mixed with rest sunshine and good nutrition...yes gut health too.....and re evaluation of whats important many of us may not progress to severe or getting more and more symptoms.

Oh yes and being believed more quickly by the medical community from the outset and by that i dont mean pills dished out immediately unless things have progressed to unmanageable in which case yes pain management too.

 

[diamond]

I should add in my first post...i did go out several times a week for a few hours at a time and do all my housework and a lot of light gardening even with fibro for many years just more leisurely pace needed ....not how it maybe reads that my partner carried things when we went out AND did all the other chores etc too... no .... sorry my mistake with grammar!

 

[Tipnatee N]

I was just thinking instead of scattering symptoms , I'm clustering it . Like my 4 groups , those just my labels to each of it's own problem. So I can get each group a correct focus of treatment.

While my grammars always in the trashcan do to my brain fog ( that and it's my third languages ) I can't keep track with all my symptoms. Like my TMJ , I'll just write it as in the group of my SPD cause it screwing with my senses. That way I believe I can control my next doctor visit to focusing on fixing things one group at the time. Maybe even thinking about separate doctors for each group who specialized it .

I want to be able to force doctors to look at things effectively .

 

[chblack]

I’m a newbie. I was recently diagnosed but believe I have had fibro for years. For me, it is widespread pain. Sometimes it is flu- like aching, I can have throbbing pain in certain areas. I have also had burning pain, pins and neeedles, and the feeling of being sore all over like when you exercise too much. My triggers are “too much” physical activity, and stress. I also have sleeping issues due to the pain. It is just awful to live with..

 

[diamond]

Welcome yes it is ...thanks for joining and contributing....you can tell us more about yourself on the newbies threads and ask/say anything any time.

 

[Tipnatee N]

I’m a newbie. I was recently diagnosed but believe I have had fibro for years. For me, it is widespread pain. Sometimes it is flu- like aching, I can have throbbing pain in certain areas. I have also had burning pain, pins and neeedles, and the feeling of being sore all over like when you exercise too much. My triggers are “too much” physical activity, and stress. I also have sleeping issues due to the pain. It is just awful to live with..

Xoxo chblack

I know! , everyday is like never ending flu . Before I was dianosed I didn't know that having flu every other days was one of the fibro symptom. Flu shots is like a nightmare for me, since everytime I get flu shot I'll get the much worst flu that even much worst than the one I had before as soon as the day after. My fever would go far beyond 102 , one time it went above that I was hallucinating lots of old tv shows from the 70's and the 80's while my tv was off.

I took too much zinc then thought it would help, of course that made it worsen . And it took me a long time before soneone can touch me. Now i'm used to living with it.