Hi, I'm new

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Hi, I'm new

Postby Picklepudding » Tue Apr 30, 2013 12:16 pm

Hi everyone. My name is Paula. I'm 37, married and have 2 children agen 10 and 6. I also work full time.

I'm not 100% sure yet whether I should be here as my first rheumatology appointment was only yesterday. The consultant specialises in fibromyalgia and said that my symptoms fit with a diagnosis of fibromyalgia. I've had more blood tests and xrays yesterday just to rule out other conditions.

My main symptoms are severe plantar fasciitis, pain in my hip and elbow and pain that migrates to other joints as and when it feels like it. I'm exhausted when I wake up in the morning and it feels like I haven't slept even when I've had 8 hours or more but it does resolve as the day goes on and from some of the posts that I've read on here my tiredness isn't the same all encompassing tiredness that some of you experience. The pain isn't too bad until I try to do something...I took my kids to the beach on Sunday and we walked along the promenade for about 10-15 minutes...when I got home, I felt like I'd been hit by a bus. I just hurt everywhere. Walking is generally very painful due to the plantar fasciitis and the hip pain.

The consultant implied that there isn't much that can be done apart from amytriptaline (apologies if that's spelt wrong!). I'm already taking a form of anti-depressant for severe IBS so I'm anxious of changing from that as that works so well. He also recommended exercise, particularly swimming. I won't swim as I'm quite overweight (although I've lost 7.5lbs in the last 2 weeks...woohoo!) and I'm in too much pain to do much other exercise so if anyone can recommend anything that helps, I would be grateful!

The other possible diagnosis is inflammatory arthritis (I also have psoriasis and Crohn's disease...I'm a walking medical encyclopaedia!), but the consultant is fairly sure that fibromyalgia will be the answer.

I'm feeling a little despondent as was hoping to go to my appointment and come away with a prescription that would make me well!! We've got a holiday of a lifetime booked for Disney World Florida in August and I'm so worried as to how I'm going to cope with being on my feet for hours a day for 2 weeks! We've saved for this holiday for 2 years and want to make it a holiday to remember for the children, not for them to remember it for being the 2 weeks that mummy was in pain.

Sorry, I've rambled on but this is all very new to me and if anyone who has experience of this could offer me any words of wisdom, they would be very gratefully accepted!

Paula x
Crohn's, IBS, plantar fasciitis, psoriasis, Vitamin D deficiency, minimal osteoarthritis, possible Hughes Antiphospholipid Syndrome and fibromyalgia...I'm a walking medical encyclopaedia!
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Re: Hi, I'm new

Postby FluppyPuffy » Tue Apr 30, 2013 1:09 pm

:welcome: :welcome: to the forum Paula :cow-wave: :cow-wave: :cow-wave: :cow-wave: Sorry to hear it's looking like you could have FM :( :( :( :( :(

There's lots of info and understanding on here, so make yourself comfy and have a bit of a looky and a read as you find your way around. Don;t worry about if you should be here or not, you've found us and we'll do what we can to help and support you thru things :cow-wave: :cow-wave: :cow-wave: :cow-wave:

What your consultant has said about there not being much that can be done apart from amitriptyline isn't quite true. Whilst there isn't a cure for FM, there are quite a number of meds that can be tried in various combinations and at different dosages that can help with managing symptoms and giving you a bit better quality of life. This linky explains about some of them http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx There are also things like physio, hydrotherapy, acupuncture and massage that can help some people. If you have a bit of a look at what could be available in your area, then go and see your GP to see what might be suitable for you to try, meds and treatment wise.

Amitriptyline is often one of the first meds used for FM as it can help with pain and sleep problems. Ask your GP about this too as it's not unusual for us to be on more than one anti~d when dealing with FM and other problems we have. It may be possible for you to take it alongside the one you are currently on that helps with your IBS.

Exercise helps with keeping us moving and not stiffening/ceasing up completely, however we are all very different in what we can do and how long we are able to do it for. Whilst swimming may suit some, for others it can make absolutely no difference. Maybe looking into something else exercise~wise could be another option to consider to find something that suits you better.

As for your hollibobs of a lifetime, it still can be that for all of you :mrgreen: :mrgreen: :mrgreen: :mrgreen: As you find out more about your condition, how it affects you and what your new abilities and limits are, it is possible to work these into your hollibobs plans to give you as much easing as possible whilst still having a good time.

For now tho, the thing to focus on is getting your symptoms and problems more under your control, rather than them trying to take over everything. It can take a bit of time to do this, and it can be a bit bumpy along the way as you try different things out, but it is possible with some patience and a bit of trial and error.

Anything you're wondering about, all you need to do is ask about it, and well see how we can help you with it :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:
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Re: Hi, I'm new

Postby shazq » Tue Apr 30, 2013 4:48 pm

Hi Paula :welcome: to the forum :cow-wave:

Try not to worry to much about your holiday as stress can bring on a flare, i went to Florida but that was pre fibro, i remember seeing mobility scooters everywhere so they probably hire them out, it might be worth you trying to find out because it is a very large place and if your walking does deteriorate you will need one out there. Or take a light weight wheelchair with you as standing queuing for rides can take some time.

We have lots of info about fibro on here so any questions just ask.
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Re: Hi, I'm new

Postby lolo73 » Tue Apr 30, 2013 9:05 pm

Hi Paula,

Welcome to the forum.

I went to Florida last year you have a few options regarding mobility. I personally worked very hard at increasing my exercise tolerance so I was able to spend all day in the theme parks. You can hire wheelchairs at the parks or malls, if not take your own from the UK. They are very well equipt for people with poor mobility and you will be able to use the disabled queue which has seats or wider aisle for wheelchairs, the staff move the wheelchair to the ride exist for you to get straight into at the end of the ride. If you have a blue badge then you can pre-order a handicap permit from the Florida equivalent of our issue offices. Ask on tripadvisor-Florida forum for exact advice they will set you right. We only did Disney parks and we tended to do a few hours in the morning then stop for a break and then a couple of hours later on. Or leave it until the afternoon and hang on for the fireworks. We never did all day and into the night.

Disney is pretty much on the flat (can only think of a small hill in Animal kingdom) and they have transport around the parks. It is worth planning in advance which rides you want to do when and check out which times which parks are expected to be busy, they are generally pretty accurate (Tripadvisor is a good place to start but there are loads of books and websites which have stats on). Your Disney passes also cover for the 2 Disney water parks, they are a great place to relax, they have sunbeds galore and little beaches etc. Ask for a table close to the toilets etc in restaurants if it helps, Americans love to please.

The areas in Disney parks are quite well defined so you could in theory sit and have a drink whilst you kids and husband go off and do some none too interesting rides which will give you time to relax, then you can all move onto another area. Also make good use for the fastpass system, it takes a bit of getting used to but it saves time massively. Fast pass is a virtual queueing system and it is free to all Disney guests (I mean anyone with a park ticket), there are restrictions but it saves you having to hang around for two hours in a queue. Any questions please message me I will try and help you. I did manage, even in the heat but you do need to pace. Also bulk buy drinking water from walmart, freeze and put in a cool bag to give you all day drinks, the parks really do charge a lot for drinks x
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Re: Hi, I'm new

Postby whoami » Wed May 01, 2013 4:51 am

Paula...I am sorry to hear that you have been diagnosed with fibro along with all your other issues.

I have been dealing with it for 23 years. There are many meds and forms of excercise. that may help with your symptoms. I could not take amitriptyline, it made me someone else. It took a long time to figure out the best treatment. Walking helps me, some days short walks with a cane and others quite long, only to pay the next day. Swimming really is another good one. Too bad you have issues with it. I have an elliptical trainer that I have found to be a huge help on days I just can't go far.

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Re: Hi, I'm new

Postby Picklepudding » Wed May 01, 2013 9:48 am

Thanks for your welcomes everyone.

I've been having a good look through the posts on this forum and am finding it very helpful, if a little scary! I have come to realise that however rubbish I feel, it seems like most of you are suffering a lot more than me, so I think I should be very thankful!

Paula x
Crohn's, IBS, plantar fasciitis, psoriasis, Vitamin D deficiency, minimal osteoarthritis, possible Hughes Antiphospholipid Syndrome and fibromyalgia...I'm a walking medical encyclopaedia!
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Re: Hi, I'm new

Postby LouLou » Wed May 01, 2013 1:38 pm

Hi Pickle Pudding

Welcome! Sporry I'm a bit late saying HI, not been online for a few days (good old fibro lol) Just wanted to add about Florida. Like Shazq I went a few years ago (been 4 times actually) and that was pre FM. They do have mobility scooters everywhere over there especially in the theme parks. There are also lots and lots of places to sit and rest if you need to while your children and hubby go on a ride. My dad doesn't like roller coasters so would be on bag guarding duty while me, my mum and sis went on the rides and the number of times we would worry about him getting boared waiting forus, only to get back to him telling us of the amazing display/dance/carnival that had just passed him lol.

I absolutely love Florida I am so jealous lol your children will love it too, Universal Studios was mine and my sisters favourite and Wet&Wild Water Park (the lufeguards are quite easy on the eye lol shhh don't tell my OH I said that lol) We used to tease my mum as she always did an itinery for us every year before we went and planned what we did on each day with rest days in between theme parks. But thinking about it now I'm so glad she did that as a day at the theme park completely pooped us all out and that was pre FM.

So may I suggest you maye a plan of all the places you wish to see and put in rest days inbetween big action days so that you can all catch up on some rest? On our rest days it would just mean staying at our villa till lunchtime then going for a slow walk along the shops or a day at the beach so you are still getting out and seeing places without pushing too much.

I'm so excited for you now lol is there room for a lickle one to join you? lol
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