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Fibromyalgia/ME

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' Forum started by AliCat, Jul 4th, 2015 at 11:16 AM.
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Jul 4th, 2015, 11:16 AM  
AliCat
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Join Date: Jul 2015
Location: Worcestershire, UK
Posts: 3,240

Fibromyalgia/ME

Anyone else on here suffer with these conditions? They make exercising almost impossible, contribute to water retention and the meds lead to weight gain.
It would be nice to connect with people struggling with these issues too and we could support each other xx
 
Jul 6th, 2015, 11:00 AM  
StirCrazy
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Join Date: May 2013
Posts: 945

My mum was diagnosed with ME but she has always struggled with weight because of her diabetes. There was talk about me having ME back when I was a teen but not followed it up since... I just try to struggle through it but do have a lot of weight to shift too. I don't take any med but did take amitriptyline back in the day. Is it the meds that cause the water retention or the condition?
 
Jul 6th, 2015, 22:55 PM  
AliCat
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Location: Worcestershire, UK
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Not sure what causes the water retention. I think it's the condition itself because it was one of my first symptoms before I started any tablets. I take amitriptyline, I don't think it's good for weight. And just being tired and in pain makes me want to comfort eat or grab something quick to eat, which usually means junk!
 
Jul 7th, 2015, 12:05 PM  
Daniellejwx
 
Join Date: Jun 2015
Location: Crewe, Cheshire
Posts: 96

Hi again AliCat! Popped over, as promised.

As I said on your diary, I suffer with fibromyalgia too, and am starting to really struggle, particularly with my legs. I'm 22 but feel like an 80 year old sometimes. It's taken me months to actually go to a doctor and get some help, because I just didn't know where to start. The doctor said it's so difficult to actually diagnose fibromyalgia, and to be honest, the patient pretty much tells the doctor exactly what the doctor would tell the patient, so it doesn't take much discussion if that makes sense.

I'm currently undergoing tests to rule out anything other than fibromyalgia, so not on medication at the moment. My mum used to take citalopram (antidepressants) strangely, but I've taken these previously and they made me really poorly. So I have no idea what they're going to give me! I've been told I have to go for physiotherapy too, but still waiting for an appointment.

My biggest fear was ending up in a wheelchair. Some days I get to a point where I'm in that much pain that that's all that runs through my mind. Told my doctor and he assured me it will not happen and he wouldn't let it anyway! (Such a lovely man). I also mentioned my weight being an issue and he was very firm in telling me that I should not let any doctor tell me that my weight is the problem. Really surprised at this!

Anyway, I hope we can talk more about this and give each other the support we need xx
 
 
Jul 7th, 2015, 14:20 PM  
AliCat
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Join Date: Jul 2015
Location: Worcestershire, UK
Posts: 3,240

Hi Danielle, really pleased to hear from you!
I've had fibro officially for about 4 years now but looking back I had a lot of mild symptoms since my 20s (I'm 42 now).
I take duloxetine, amitriptyline, co-codamol and ibuprofen as well as a good A-Z vitamin and magnesium. I also need quite a lot of laxatives! People can't believe I take so much but I couldn't function without my meds.
Last year I started on gabapentin to help with the neuropathic pain in my legs which had got unbearable. As a result I put on a stone and a half. I'm off it now and find that the healthy eating has helped more with symptoms than I could ever imagine.
I force myself to take the dog for a walk every day for at least 20 minutes as I was told back at the start that walking is very therapeutic.
My mum also suffers, and my sister too, and my 17 yo daughter is starting to display symptoms, which breaks my heart😢
Looking forward to hearing more from you xx
 
Jul 8th, 2015, 20:37 PM  
HeavyWeight
 
Join Date: Jul 2015
Location: Scotland
Posts: 120

Hey there. I also have fibromyalgia. I was diagnosed when I was 19/20 but I reckon I have had it since I was about 14.

I understand about the weight issues and pain from the conditions. My legs get really awful, and I suffer from really bad migraines. Oh and the fibro fog drives me bonkers!
I find exercise really difficult when I start, I want to cry whenever I move. If I build up exercise and do it routinely I enjoy it and feel great! But then I get a bad fibro period and stop exercising again and well the cycle starts again!

Unfortunately I seem to have chemical sensitivity so I can't take a lot of meds. I either feel awful on them or become intolerant. Gabapenton made me vomit constantly, and pregabalin made me so exhausted and horrendously emotional! I keep trying new things though in the hopes I will find something that will take the edge off!

I walk about a mile or more a day, and I am about to try some gentle exercise dvds again like callanetics. hopefully I can work it back up to where I used to be. I know my weight isn't the cause of the fibro, but I think that if I am a normal weight my poor body will have a better chance!

I would love to talk you all about this, as lets face it most simply can't understand! I would love to gie and receive support!
 
 
Jul 9th, 2015, 09:34 AM  
AliCat
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Join Date: Jul 2015
Location: Worcestershire, UK
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Do you all feel better this time of year? I don't know whether it's the sunshine, the warmth, the healthier eating or the water drinking that does it, but I definitely prefer the summer months. Too much heat drains me, but generally I do better. I can always decrease my painkillers in the summer.
Winter, on the other hand, is so depressing. I eat stodgy food, don't leave the house, feel loads more pain etc. I've said to hubby that I'd like to retire abroad but he's not so keen.
 
Jul 9th, 2015, 11:02 AM  
HeavyWeight
 
Join Date: Jul 2015
Location: Scotland
Posts: 120

Depends really. I find it is less painful but almost more tiring I think! But I work more in summer so perhaps that is why I am more tired!

I don't do well in extremes, too much heat or cold and I feel awful. Saying that though I would rather have a cold house as I really can't sleep when it is hot and stuffy. If it is cold I can always ass an extra cover!

Heat also makes me feel more sick, just stuffy and nauseous all the time - horrible for travelling. So I do take anti sickness pills from the docs.

So after that babbling - pain is better in some, but I get more tired and sick!
 
 
Jul 9th, 2015, 11:52 AM  
AliCat
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Join Date: Jul 2015
Location: Worcestershire, UK
Posts: 3,240

I'm exactly the same. I can't do extremes and prefer a colder bedroom for sleeping. I've been feeling nauseous for days now, wonder if it's the weather, but have put it down to all the food I'm eating!
I'm off to work later, that's always trying, especially when it's hot and I sweat so bad 😥
 
Jul 9th, 2015, 13:49 PM  
Daniellejwx
 
Join Date: Jun 2015
Location: Crewe, Cheshire
Posts: 96

I much prefer being cold and wrapping myself up! I know what you mean about the summer though... I have noticed less pain in my legs over the last couple of months. Although I suffer with the over-sensitivity to light that some people get with FM so I find it very difficult being outside in such bright sunshine. Does anyone else have this? The doctor was telling me that some people get over-sensitivity to sound, which I get now and again, and obviously the over-sensitivity to pain, which I get really badly in my legs if I knock them or something xx
 
 
 
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