New here looking for advice and support

General
1

Hi

A little about me first then I'll bombard you all with questions.....

I'm 36 and became ill March 2012.

It started with loss of smell which progressed to completely distorted smells and taste.

I then developed dysphagia, cognitive dysfunction, speech problems, extreme fatigue, weakness, vision problems, bladder and bowel problems, migraine etc etc etc you probably know the drill.

I have been seen by 3 neurologists, 2 ENT's and am due to see a psychiatrist.

I was told it was all in my head, but not being able to function like an adult and more like a 90yr old or 5yr old child, is more than "in my head"

I seem to be hyper sensitive to smells but unable to distinguish what they are, this is not just a few smells, I can't tolerate food, perfume, grass, trees, car fumes, anything that smells. BUT I can't smell burning, petrol, gas, rotten food or spoiled milk. All "nice" smells are bad, all "bad" smells don't smell.

I am on food supplements as I can barely eat.

The fatigue and tiredness I am feeling is like nothing I've felt before, ever, and I was quite active before all this.

The joint and muscle pains are just ridiculous and severely limit what I can do.

I started a basic seated yoga routine 2x a week for 20 mins hoping I could ease some of the pain and get more active.... wrong!! I ended up in hospital with severe chest pain, as the muscles had become too weak which meant I couldn't get a proper breath with out pain.

Living with pain, tiredness, confusion etc every single day takes its toll and every now and then I have a melt down and feel like I just can't go on.

I am taking gabapentin, omeprazole for gerd, beta blockers for ridiculous heart rate & blood pressure (possible POTS) but no answers or real help.

I am struggling with basic everyday tasks as I really don't have a clue what I am doing from one min to the next.

Enough about me, I'd like to know how your symptoms started, is there a set pattern?

And most of all how do you cope?

Thanks for reading

Lisa

2

hi lisam. as for me i dont think there is any set pattern. i was diagnosed about 28 years ago with a severe case of cfids ( chronic fatigue immune dysfunction syndrome also known as CFS or ME) i had first gone to my family doctor who didnt know what was wrong with me only that he said i was very very sick. after that i went to a cfids specialist who was treating this as well as fibromyalgia. I also went to a local clinic and ultimately met the person who became my medical doctor. I was very fortunate that no one implied that any of this was in my head. I had all the symptoms you described and then some.I hope you have support and understanding from your family and friends. It is hard to cope indeed but i keep on belieiving that there will be effective treatment, cures, miracles. I hope and pray to see it come to light. My spirit is strong and i have my loved ones who help me as well. For the most part it sounds to me like some of your symptoms are being treated and for the rest coming here to a support sight where you can share and get compassion , concern is a good step. all the best to you and many HUGGGGGGGGS

suzie

ps i want to tell you that i went from the first ten years being totally bedridden unable to care for my self on any level to being only fairly homebound but able to talk, read, type, cook and clean some and able to hold and use a remote to use computer and watch tv.. i also took up baking a few years which became a passion for me whihc i hope to get back to doing again.. i tell you this to give you some hope.....xoxoxoox

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Hi Lisa and welcome.

You surely do have some serious sounding symptoms hitting on you. Like you, I have the stupid dysphgia and smell issues, plus other fibro stuff.

What I'm wondering is if you've been checked for auto-immune diseases, specifically MS. What makes me suggest this are you speech problems, vision problems, dysphagia, weakness, bladder, bowel, etc., etc. I'm not a doctor so please don't think that I have any ability in regards to medicine, but those symptoms oftentimes seem to go along with MS. There are tests for some auto-immune diseases, and I think that MS is one of them. It might be worth your while to see a rheumatologist and be checked for auto-immune diseases, since they so often seem to go hand in hand with fibro. Every person with fibro would be helped by doing this, I happen to believe.

Please do not let any doctor make you believe this is all in your head. Obviously it isn't! If you're like me and start choking out of the blue, it's horrible and scary and definitely not something you would choose to do! Nor would be bladder or bowel issues. I mean, really? Do these people even listen to themselves? What woman would want to mess up her pretty outfit by having an accident???

Coping is really a huge question for all of us. How do we cope? Well, you go through stages where you're fearful, upset, angry, shocked, determined, and repeat. Then you start getting used to your symptoms and trying to keep up with them. The very best advice I think that has ever been given to people with fibro and other related illnesses? Right here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christ... It's a bit of a long read, but well worth it. You learn how pacing yourself is everything. You have to know when enough is enough and to stop and take it easy. I HAD to do that for grocery shopping because no way could I get through it otherwise. Walking the huge floor over and over again? Get an electric cart and use it. Carrying the bags home and up ten steps? Carefully, bit by bit resting whenever I needed to stop, and leaving the heavy ones for my sister. I even had to close the trunk and return later for the non-perishables. Stuff like this helps you to do the things you must do. And then you have to learn how to scrape away the ones you don't need to do.

Mine started by hurting myself during a gym session with a big ball that I was trying to support against the wall while squatting. WRONG!!!! It never really got better but improved somewhat. Then I had to dig out a parking space during a blizzard of wet snow. That did it. No pain relief since that time, and the pain spread to other areas. Weakness also follows now, plus stiff joints that I can barely move in the colder months. I just got checked for the choking - they told me that I have a pretty healthy stomach and colon area but not a word about WHY I was choking. WHHHHHHHY???

It's a slow process, Lisa. It can take months, and sometimes years, to figure out what's going on with us. One of my best friends on the site said that her rheumatologist feels that fibro is just the pain of something else that's going wrong in our bodies, such as arthritis, MS, lupus, that sort of thing. I tend to agree, as it makes so much sense. But again, I'm no doctor, etc.

Please keep on keeping on. That's the way that you'll help your illness the most. There IS an answer, it just may take some more digging.

Gentle hugs,

Petunia

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Beautifully said, Suzie! I love it that you added the part about getting hope from your new life. That's it, exactly. We have to realize or remember that we can have hope. You can also still have fun. But you do have to learn how to pace yourself and rearrange your life due to the fibro.

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Thank you for your replies.

Suzie, how did you improve? I'm guessing the clinic you attended had a lot to offer?

What I'm wondering is if you've been checked for auto-immune diseases, specifically MS. What makes me suggest this are you speech problems, vision problems, dysphagia, weakness, bladder, bowel, etc., etc.

Yes I've had a clear mri, clear evoked potentials, and all blood are clear too, I've been tested for lupus twice.

It might be worth your while to see a rheumatologist and be checked for auto-immune diseases, since they so often seem to go hand in hand with fibro

Oh yes, I would love for this to happen. My dad has osteo and rheumatoid arthritis and this wasn't picked up on the usual inflammatory tests at the gp, only by a specific test by rheumatologist. I just can't get a referral from anywhere!

If you're like me and start choking out of the blue, it's horrible and scary and definitely not something you would choose to do!

I was told by an a&e nurse that I probably thought I couldn't swallow!! I then saw a speech and language therapist who told me the swallowing was due to anxiety based on the smell and taste of food. I accepted that as food did smell and taste rotten. But I have now kind of dealt with that, I try and eat what I can, yet I still struggle with it, I've had stuff go up my nose from my throat which isn't nice. I try to drink fluids often to keep my mouth lubricated but when you struggle to swallow and can't stop peeing there's only so much you can drink haha!

You learn how pacing yourself is everything

This is a major problem. I don't know how, I push myself to do things that need doing then I end up in a heap crying like a baby because I can't take the pain or I'm so tired I just can't go on. I think I have around 1hr a day maybe 2 on a good day where I'm able to push myself, I'm sleeping around 10-12hrs a night but still no energy.

I built myself a little pacing plan. Yoga 20mins 2x a week, walk the dog 20 mins 2x a week. I was so proud I managed to do this for about 2wks then what I believe is costocondititis hit, that was it yoga out the window, back on my area for another 2 wks. I tried to go back to my little plan only for the same thing to happen. It's very frustrating.

Mine started by hurting myself during a gym session with a big ball that I was trying to support against the wall while squatting. WRONG!!!! It never really got better but improved somewhat. Then I had to dig out a parking space during a blizzard of wet snow. That did it. No pain relief since that time, and the pain spread to other areas. Weakness also follows now, plus stiff joints that I can barely move in the colder months. I just got checked for the choking - they told me that I have a pretty healthy stomach and colon area but not a word about WHY I was choking. WHHHHHHHY???

This is interesting to me as I started with a really bad sinus infection, that went and left me with no smell, a few months later I had a minor head injury and damaged my shoulder, x rays showed wear and tear in my neck but nothing else, a month later my smell came back but all wrong, then everything else piled on.

Anyway enough of my moaning, I guess I'm just trying to make sense of something I really don't understand at all!

Xxx

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Welcome Lisam, the replies so far here have been great! I so agree that there are no set patterns for how
all this starts. I think many of us have had fibro for years before we get the ‘final diagnosis’. I suspect that I had mild symptoms of fibro for a very long time, and then I had a loved almost die over seas and had to travel to be with them and then fight so hard with the insurance company to get them home and into further care. I didn’t realize it at the time, but that stress exacerbated my symptoms. I was exhausted all the time, and suffered from a constant body ache, like I had a very bad flu etc. we all know the drill as you so aptly put it, hehehe. At this time my GP discovered at my yearly physical that my RF was sky high. Luckily for me that got to my a rheumatologist pretty quick, and it was her who diagnosed me for fibro, pain amplification syndrome (to me the same) and lots of osteoarthritis. The high RF came down, stumped
the docs, as they don’t know if this means I am at the start of an inflammatory arthritis or an anomaly. I’ll take the anomaly, thanks, lol. I had my GP say just once that she thought this was psychosomatic due to my high RF levels. After my diagnosis with the rheumatologist, she has been much more supportive. I believe that we must be our own health advocates and strongly suggest journaling on how you are feeling, chronically your pain, symptoms, and intensity; questions for the doc, research you have found… etc. Journaling can be difficult if one is low on energy or has painful hands, but I have found smartphones, tablets and some computers these days have a dictate function, like Siri with iPhone. On days where you have little to no energy this still allows you to journal by just using your device via voice. And it even allows you to even dictate your posts here. I am using it more and more. Gotta love technology.
I too say keep hoping for improvement, a cure and a decrease in symptoms. I find now that I embrace my condition, that I have reduced the stress created by trying to fight it, I do have days where I feel better. I am very lucky that I am still able to work, but admit there are days when it is very hard, but I find that work serves as a great distraction form the pain, but probably contributes to my stress, lol. I have learned many excellent coping strategies from other members, who are so wise and experienced. I am learning to pace myself. Big activities like an evening out (ah where are the times when I use to pull an all nighter, lol), I do on Saturday, where I can rest throughout the day and have Sunday to recover before I have to go back to work. I have learned to identify some triggers, so I can better prepare. I ask for help now, which has been so hard for me to do, but is so key to not putting myself into a flare. Although this stretches my budget, I have someone cut my grass in summer and do snow removal in the winter. Saves what precious energy I have and doesn’t over tax my body. I hope you find many resources here to help. Hugs!!!

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Hi, sorry what is RF levels?

I don't get to see any of my test results (prob as they are always negative ha!)

I didn't know that about siri!! I was thinking earlier how I'd like to be a more active member of forums but am finding the typing replies hard, not just with my hands hurting but spelling, being able to see the screen properly (I'm on a tablet having the keyboard take over half the screen means I can barely see the rest!)

These are the types of things I need, people sharing how they manage to do things, a lot of the time brain fog has taken over and I can't seem to think outside of what I already know, if that makes sense....

I have a symptom tracker but I just get fed up of entering the same information over and over lol though I did notice that things get worse around my period so it was useful.

Thank you, I'll have a look round see what coping methods I can borrow :) x

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RF means rheumatoid factor, which can be elevated sometimes for some autoimmune diseases as we’ll as other conditions. RF has been used as one of the tests to support a rheumatoid arthritis diagnosis. Not always conclusive.
Siri is wonderful. I am using that program more and more. Personally I see new technology like tablets and smart devices as very useful tools for people with disabilities. I find it difficult to hold a book open to read, but e-readers take away my hand pain, as I can prop up my reader, and just light tap turns the page as one example.
I found monitoring my symptoms and what was going on in my day did help me to identify some triggers, but I still find I have a lot of unexplained flares. I too get flares related to menustration.
Enjoy your browsing, there is so much here, and please feel welcome to ask questions. I think you are off to a great start. Hugs!