Ok so now I finally need help. ...

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Ok so now I finally need help. ...

Postby Doris Dickens » Sat Jun 20, 2015 12:12 am


Four years ago after years of pain in the back, lower and upper, hips, knees, legs - well basically all over I was finally diagnosed with fibro. I was given medication to take Pregabalin/Gabapentin and various painkillers Oxynorm etc however these made functioning worse. In fact I became a zombie. I also felt I didn't need them every day.

I've managed for the past four years on and off amitryptline (?) and painkillers as and when. Recently though my legs, back, arms and shoulders have become worse. I still don't have this pain all day every day. Generally the dull dead numbness arrives tea time or occasionally can be there all day (particularly when weather is damp).

I've been back to the Dr, back for a MRI, brain scan, electro testing by the neurologist and nothing. Signed off no follow up.

As I write this I'm laying in tears. Legs are dead and heavy to the point I'm in agony. I've got up shuffled to the end of the bed and taken more painkillers.

I think my main point for writing this is that I feel like a fraud. I'm not like this all the time it comes and goes. Sometimes it's a dull ache or tingling calves and shins like electricity tickling along the skin at other times I'm in agony and can't move. I could be shopping and suddenly not be able to lift my legs literally having to drag them. I feel if i do say I'm in pain I'll be judged and misunderstood and I keep it to myself because I don't want to sound like a whining hyperchondriac and its starting to get me down.

I'm also confused is this fibromyalgia or a label I've been given as they couldn't find anything through all the tests. Grrr

Any advice really appreciated from any one who understands.

Doris Dickens
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Re: Ok so now I finally need help. ...

Postby whoami » Sat Jun 20, 2015 12:58 am

First of all you are not a fraud.....try not to go there.

The way you are feeling is quite common among us. We look fine at times and then just when we least expect it things go downhill.

At one time I felt guilty. I have been off 25 years and there are dys when I feel great, look great. Those were the days I felt guilty. It took a while but my Dr helped me get over it.

Just remember, you are not fibromyalgia and you are not defined by it. You owe nobody any explanation.

It may take time to find med that help you. Talk to your Dr as there are other treatments available. Myself, I have tried many and not a lot helps. I have chose to not take meds after bei g on them so long. . I am learning all over again and trying to deal with this on my own.

This illness is not easy but we can live happy lives, we have to change the way we do things, respect our bodies and listen to them.

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: Ok so now I finally need help. ...

Postby fitbit » Sat Jun 20, 2015 1:21 am

Hi doris
I feel the same as you so much of the time. Different pains but the guilt and testing myself all the time. I can't except the diagnosis and having second opinion even though the rheumatologist was definite. The fog in my head is very bad at times work and driving are so hard some days. I also have come of all meds as the numbness was horrible and again work was very hard. I have no answers but wanted to say you're not alone x
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Re: Ok so now I finally need help. ...

Postby TheHud » Sat Jun 20, 2015 2:52 am

Defo not alone, same pattern. My doc today asked if I had finally come to accept Fibro, I said sort of but having spent years thinking it is all about others being less wimpy than me and hoping the worsening state of me was menopause, it will take a while to accept. I decided what I can do is sort out issues that can be sorted like my crippled lumpy hands, so agreed to go see the hand and wrist people. Pregab helps me alot.

When this disease steps up a notch it gets to us and we once again have to get used to a new level of disablement and changes to our lives.

When I found out that due to problems with the optic nerve blood supply and I had to get used to the idea that at some point I will probably lose sight, I made a bucket list. We decided that the fastest and cheapest way was to go on cruises. Now because of the fibro (was not diagnosed until recently) I saw at 3am the marvel of the sunset meeting the dawn while perched on a sun lounger with my memory foam pad on an empty deck in the middle of the Baltic sea. I sat on our balcony at 4am as the massive ship we were on sailed up the grand canal into venice only feet from the shore without hardly a ripple, all the lights twinkly and fairytale like. I was sat on our balcony going through the bay of biscay deck 9, front, with the bow wave rising past our balcony as the ship crashed through the storm all night (frequent hot chocolates and toilet trips inside the cabin allowing). Gibralta straits and an amazing lightening storm middle of the night. At home and I watch the sunrise which I shall be doing in about 25 minutes and listen to the birds waking up and the night birds going to sleep.

Not sleeping well has its advantages and now I have given in to the fact life is much better :) Acceptance, sounds blaze and brave but its a survival mechanism and you will find ways. Another advantage to not staying still and not sleeping more than an hour or so at a time, the stiffness is less, I get less crampy and fewer spasms and the heartburn and other pains don't wake me up as much.

You will get through this bad patch, see your doc as advised, try pregab again and nothing else, focus on posture and keep your legs moving all the time.

Take care
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Re: Ok so now I finally need help. ...

Postby Jasperheidi » Sat Jun 20, 2015 10:41 am

Dear readers, I can relate 100% to EVERY single word you say. I had shingles Dec 2013. Afterwards i had generalised pain, brain fog and debilitating fatigue. My doctor said it was depression. I tried 3 anti depressants, each caused nasty side effects!. I insisted on a referral to a rheumatologist who said id FMS. She prescribed pain meds and told me exercise daily!!..She refused to test me for anything else. My occupational health doctor (whom i must report to.as im off work) suggested sleep studies to rule out sleep apnoea and aid sleep. I personally arranged this test with another respiratory consultant. I also had CT scans and blood tests. This consultant said id periodic limb movement disorder, involuntary muscle spasms that disturb my sleep. He prescribed mirapexin. He told.me my bloods were normal(he was mistaken!!!)My rheumatologist was outraged as she believed id fms....end of....exercise and suck it up and deal with it! She discharged me saying she could do no more. She advised me to try CBT!!! Cognitive, behavioural therapy!! She did offer me a consult with another rheumatologist. I accepted a month later as id v little change on mirapexin. This 3rd consultant disagreed with fms diagnosis saying i was "atypical". He reviewed bloods done by respiratory consultant and found he had missed my fasting iron studies results which suggested id haemachromatosis (HH)!. He sent me for repeat bloods and MRI of forearm and brain. Changes showed consistant with HH. I had genetic testing(simple blood test) which confirmed HH. He referred me to an endochrinologist who said ALL my symptoms..(depression, poor memory, muscle and joint pain, muscle spasms and limb numbness), were due to HH!!!. He said he blamed lazy doctors for fms diagnosis and in HIS experience, 99% of patients diagnosed as fms, have reasons for their symptoms however they have not had the right investigations to accurately diagnose them!!.Since ive started treatment for HH(i have 500mls blood taken off at weekly periods until my blood levels stabalise), i just cant get over how well i am!!! Most symptoms have gone!!!. Please ask your doctors for fasting iron study blood test to rule HH in or out. NEVER give up! You are NOT mad or imagioning your symptoms! I believe its NOT a matterbof getting the meds right but rather getting the right specialist prepared to look at the bigger picture and who will order AND accurately interpret the right tests!. I wish you ALL the very best x.
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Re: Ok so now I finally need help. ...

Postby Zia2014 » Sat Jun 20, 2015 2:26 pm

I still feel like a fraud something, recently I used my stick and to start with was okay but after a while got the usual 'dead legs'. When I was walking okay I was thinking 'should I really be using my stick' but by the end I was very glad I had it!
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Re: Ok so now I finally need help. ...

Postby Doris Dickens » Sat Jun 20, 2015 2:46 pm

Thanks everyone. I just find it quite awkward, well the variation in pain on different days makes you seem a bit attention seeking or whinging. I think I need to install in my head that it's people's ignorance and misunderstanding of this 'syndrome' that is the problem not how I feel!

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Re: Ok so now I finally need help. ...

Postby sandiepandie » Wed Jul 29, 2015 11:32 pm

I've had fibro and cfs for over 15 years. I've just come back from being on holiday with my partner, his sister and her hubbie and their son and his girlfriend. They are the loviest of people. But, even after all this time they still don't get it.

They know about my cfs, fibro, ibs etc - and have spent time with us on holiday before, so my condition is no surprise to them.........I spoke to them honestly about being abroad in the heat and how it would affect me, how there are good days and bad days and just kill me please days!........ yet.....

We went to disney, orlando. I had explained that I wouldn't be physically able to do the long days there. I would be happy to do about 7 hours at most. I had been honest before going on holiday.

I found going from cold air conditioned places to really hot heat and back again was causing the most awful pains and cramps. I kept as silent as possible as I didn't want yo spoil their holiday.

I HAVE to use a wheelchair to get around so I take my own electric. I was constantly exhausted, tired and in terrible pain. "Tired? Well it's not like YOUVE had to walk round is it? Wonder why that is?" They weren't being mean - THEY JUST DONT UNDERSTAND.

i had a couple of reasonable days where I felt ok - but the next day was the worse. "But you seemed fine yesterday! What did you do or eat that made it happen?" GGRRRRRRRRRRR! "NOTHING!" I wanted to shout! It was a couple of days restating before I felt "reasonable" again.

They then wanted to do a 14 hour day in disney!! LIKE HELL WOULD I!!!!!! I auggested they all go and my other half would come back for me much later in the afternoon/early evening. "Oh dear not feeling well? Think you're coming down with something? You weren't too well a couple of days ago were you?"

I've given up trying to explain over and over again.

I love them but even after all this time, they just can't seem to grasp what fibro and CFs are all about! It's not just strangers but it can be nearest and dearest as well.

It would be so much easier if we changed colour or the areas in pain glowed red or something so people could actually see our pain and discomfort and tiredness.

I have yo say my partner is wonderful, patient and understanding .......but even at times he doesn't always twigg.
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Re: Ok so now I finally need help. ...

Postby UnderSiege » Thu Jul 30, 2015 12:15 am

Hi Sandiepandie.

I know right? Some ppl will never ever, not in a million years, even if you have their brain reprogrammed a few millennia into those million years (when such technology is possible) and give them a dose of Fibro telepathically (hey, it's the future remember) ever get or understand or clear their thick heads enough to take on board the simple message about the Fibro...

Ppl for instance like my own family... (God bless 'em... and follow it up with a divine beating)
Honestly, it makes you want to chase them and punch them repeatedly in the head to make their brains work again (if it wouldn't hurt so much doing so)

... Anyway, now that I've got that off my chest, I'm really sorry that your holiday was more of a strain than a cool experience (I've done the Florida, Orlando, Disney thing a few times myself and it's awesome... when you're feeling relatively ok and not plagued my numbskulls!)

And yeah, you're right, it would be better if maybe there was a visible sign of it being an issue or flare up (as long as it didn't make you stand out too much or in a negative way...)

Methinks your partner needs to make up somewhat, I mean they are his family right?

Take care!
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Re: Ok so now I finally need help. ...

Postby Queenie_70 » Thu Jul 30, 2015 7:52 am

I am at the point where I just don't tell anyone anymore. My GP and specialists know what is going on, and I guess they are the important ones in this as they can get me the help I need.

Chronic pain is not a banner we wear and so those who don't suffer don't get it. Yes, if we had some sort of visual cue this would at least help, but that is the same for any invisible illness...depression, most cancers, even the early stages of MS...yet we carry on and do what we can. My folks have realized that I am not who I used to be as they have seen me crash, so when they did come visit last week, we took everything at my pace, which I have to say, was lovely. They would let me take my ten minutes quiet time and go find something to do, then come back and get me so I could join in for another short burst of activity.

Hugs and understanding to all of us that have to smile and fake it....we are a tough bunch of cookies...

"Life is not measured by the breaths we take, but by the moments that take our breath away."
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