Is It All Too Much?: I was diagnosed... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Is It All Too Much?

babebatista
babebatista
16 Replies

I was diagnosed with Fibromyalgia back in 2010 after having a barrage of tests. As you all know there is not one test that says you do have it, they have to exclude other conditions first. Like most of you I googled it and found some good support and information websites this being one of them. All of the symptoms that were listed on the page in front of me I mentally ticked off, 'Yes I have that', and 'I suffer from that' every single one was ticked off so after all of the testing they can do they finally diagnosed Fibro. Since 2010 you may or may not be surprised to find that I have also been diagnosed with the following illnesses:

1. M.E. (Chronic Fatigue Syndrome)

2. Type 2 Diabetes

3. Rheumatoid Arthritis

4. Arthritis

5. A nerve condition that affects my whole body

6. IBS

I also suffer from Scoliosis but was diagnosed with that back in 1997 when I was 16. A lot of people say that these conditions go hand in hand with Fibro but no one of us is exactly the same (I don't think) anyway. The first thing was the M.E. if you don't suffer from this condition then I count you as very lucky. Have you ever been so tired that you've been in tears because you literally cannot move even one step because of the massive fatigue you face? We all get tired, but this is like tiredness you've never felt before. I feel it like someone is putting bricks on my shoulders and they keep adding more and more and more until finally my shoulders buckle and I'm down. That is me everyday fighting the tiredness. Some days I win the battle some days I don't. I try very hard not to give in to my illnesses. I fight with every breath I take. I get up in the morning and have my meds (8 just before breakfast), I have breakfast and get dressed. I may go out in the wheelchair for a bit of shopping or stay in and watch dvd's but the point is I do it to not let all of my illnesses beat me. I could very easily have days where I stay in bed but I don't want to. Don't get me wrong when I have to I do. There are days when I can't even lift up my duvet to get out of the bed (well it's a riser and recliner - more on that later). I can't lift my head up off the pillow and I sleep all day. I don't eat because the tiredness, the fatigue has won and I'm bad all day. I have found that when I am extremely tired that I can't even put words together to form sentences. I'm not even properly awake so if someone talks to me I'm not actually properly aware that they are talking to me. Sometimes random words just come out of my mouth. There is a point in time with this fatigue that is very problematic. It's the half asleep state, either coming out of a bad fatigue sleep or going into it. It's best not to talk to me or say anything important or ask me things because I have no recollection of it later on when I properly wake up. Just last week my 17 year old son asked if he could use the Xbox and apparently I said yes. I asked him, 'when did you ask me that question' his reply was, 'when you were half asleep!' So we had to have the same conversation that we've had many before which is don't ask Mum questions when she's half asleep. M.E. isn't the same as MS. MS sufferers get better and have relapses. M.E. robs you of your mobility and your memories. Since having Fibromyalgia I have suffered with short term memory loss but you get memory loss with M.E. M.E. is debilitating in the fact that it leaves you so tired your whole body aches with tiredness. If you can't lift your head off the pillow then your not going anywhere. You can even feel okay some days, so you get up, get dressed, have breakfast and go shopping and then in the afternoon be so tired that you just can't move. There are times I can get in the car but then I can't get out. My whole body is so tired that the rub. Everywhere is tired. Fibro is chronic pain. I sort of have it hand in hand with the Fibro. My body has been tested to the limit over these 10 years. I dreaded going through the whole pip thing. On DLA I was on indefinite and was one of the last to go through the whole changing over. Thankfully we had help from the CAB and we got the PIP full whack and don't have to get it again for another 10 years. The whole thing is truly awful and many people have had to go through appeals and that's a difficult process. I remember having to appeal my first DLA claim and that was scary. The rheumatoid arthritis is in my knees and elbows and wrists. The arthritis is in the bottom of my spine. About 3-4 years ago I found that I can't lie down flat in a bed mainly because of the scoliosis but more so due to the arthritis in the bottom of my spine. I had help from occupational therapy and together we tried all sorts to get me to be able to get back in bed upstairs. I had been sleeping in my armchair with my legs resting on the couch. Eventually we ran out of options. I told someone at church about it and they mentioned a riser/recliner so I got in touch with OT and we went to a mobility aid provider so I could try one out. It risers so I can get out of it easily to move to the loo and shuffle to the kitchen or whatnot. The other thing is it reclines back so far that it gives you the sensation of lying back but your not straight, your sort of lying in a V shape and it's been a blessing. I have to sleep downstairs because the bedroom upstairs isn't big enough for the bed and my chair. Arthritis is horrible, absolutely awful. The nerve pain we don't have a name for. All I can tell you is that it's like when you have pins and needles but it's painful and extremely sore. It gets all over my body (Yes even there) and I can't do anything except take Paracetamol on top of all my meds.

I was very shocked when my GP told me I had type 2 diabetes. I remember it like it was yesterday. I went to get the results of a simple blood test and he quite bluntly you have type 2 diabetes. I will say it was a huge shock. I honestly thought to myself, 'what else?' 'Isn't Fibro and M.E. enough?' Isn't living with rheumatoid arthritis and normal arthritis enough?' Now my life needs to change again. So now I have to deal with not one condition but at least 5-6. Life isn't easy for you and me and we have to deal with a lot. Our illnesses are invisible most of the time. Unfortunately because of the illnesses I have you can see a physical change in me. I've put on weight :( I take 8 tablets in the morning, 4 at tea time and 5 before bed. Is it all too much? It certainly is, but somehow we deal with it, somehow we face each day ready to fight, and we have to be ready to fight. Fight for your rights, fight for your benefits, fight for your loved ones to show you support and help when you need it. Fight your illnesses, as much as you can. I understand that we are all in terrible pain and face a lifetime on medication and potentially picking up more illnesses but its what we do with ourselves that we have to fight for. I fight for you and for me and for more people to understand our illnesses and how they make us feel. With this post my aim is to let you all know that I'm suffering too, just like you and I know and understand your feelings. If you wish to contact me or comment then please do so. I hope my post has helped you, to know that your not alone and someone is suffering with the same thing as you, we are fighters, and we fight together!

xoxo

16 Replies
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YASMINTINA
YASMINTINAFMA UK Volunteer

Debilitating it is, ME without any other health conditions added is enough and reading your post is an explanation of how it effects your day to day living. Sometimes it’s good to write down what we are going through or feeling that very moment, yes being fighters shows the inner strength we find within. Stay positive, someone here will always be reading your post. Xx

4 likes
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babebatista

Thank you very much for your lovely words. I will try and update when I can. I also think it's nice having others around you that think and feel exactly like you do. xoxo

1 like
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bobbybobb

It is possible to reverse type 2 diabetes, have you discussed this with you GP and has he given you any advice on how this might be achieved. x

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baraba
baraba
in reply to bobbybobb

Type 2 diabetes IS reversible. Many women develop type 2 diabetes during pregnancy and, after giving the birth, revert from themselves to normal after some time. If it is possible for them, it should be possible for everyone...

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bobbybobb
bobbybobb
in reply to baraba

Having multiple health problems, with diabetes type 2 being reversible for most, it would be one less health condition to worry about and all the associated problems that comes along with having diabetes.

1 like
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baraba
baraba
in reply to bobbybobb

The truth is very simple - most of you, suffering on multiple health problems, are responsible for the condition you are in. Gaining weight has become so fashionable in USA and UK, that there are hardly people under 300 pounds. You can not expect yourself to be healthy if overweight or obese. There have been so many reports from the people in the forum, who have improved their health by simply reducing their weight. Of course. it is easier said then done. Why not undertake something, instead of looking for the magic pill...? Your health is in your hands!

1 like
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Zoonie
Zoonie
in reply to baraba

Gaining weight has not become fashionable, it's become inevitable due to the consumption of junk food and shear greed! I agree type 2 is reversible, my wife has done it despite having pituitary gland problems, she had to loose a lot of weight! We now eat a very healthy diet consisting of fresh food using as much organic produce as our budget allows, this has also been good for my Fibromyalgia so a double whammy!

2 likes
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babebatista
babebatista
in reply to baraba

Hello Baraba. I was diagnosed with Scoliosis at age 16 but was very slim and healthy and di as much physical exercise as I could. When I was working I slimmed down after putting some weight on to size 16 but I walked everywhere or got the bus or train. I only started putting weight on once the illnesses took hold. They don't know if I got it from having Swine Flu in 2009 or having a fall on ice in 2010 and landing on my coccyx. I have put weight on yes possibly from being immobile but that is because the Fibro and M.E. have made me that way. I'm in a wheelchair most of the time unless at home resting. I know that I've put weight on and two years ago when I was able to move about a bit more I lose 2 stone with Slimming World. Yes, okay you may be right about reducing weight or undertaking something but you have failed to grasp one very important point. Fibromyalgia and M.E. most of the time will not let you because you are in pain every single minute of every day or asleep from the fatigue you are under. If we didn't have to deal with these illnesses we may be able to exercise or continue losing weight on a health plan but you have to look at the bigger picture which is that it is very very hard to do things like that because we are not in control of our bodies. We didn't ask for Fibro or M.E. I was quite happy working where I was. I didn't say to myself I'm going to give myself Fibromyalgia today or M.E. tomorrow. You can get it possibly from a trauma or an injury. I've had both of those. I am aware that my health is in my hands and I know it every day. I do think your unfair saying that most of us are responsible for the condition we are in. You could fight the pain and the tiredness every single day and still be unable to do anything. Living like this is one of the worst things in the world because we don't know if we will get better, we don't know what will happen with our bodies from one minute to the next. I pray to God every day that my children don't end up with it.

If I can reverse the type 2 diabetes then I'm going to be fighting so well to do so. I've been on the courses and changed my diet, I am losing weight but that's because there are only certain things that I can eat now. But I will try.

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Plumcake

I am pre-diabetic and have undertaken a course to prevent type 2, and was recommended a book called The Diabetes Code by Jason Fung, He has also written the Obesity Code,

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bobbybobb
bobbybobb
in reply to baraba

I disagree with you. I am not overweight. Eat healthy. Do not eat sugar. Yet I have pre-diabetes. Sometimes there is a genetic predisposition to disorders. Some medications can have an effect on peoples weight. It is true it is better for you to have a health diet. It is very naive of you to blame people for their health conditions.

2 likes
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baraba
baraba
in reply to bobbybobb

Wow... Did not mean to offend anyone. I am not Fibro sufferer myself, but have been researching this condition for about a decade. My wife had a bout of Fibro lasting a month, that is where I first got in touch with it. If anyone knows that your problems with the pain and other issues are real, it's me. Even depression, which to most people seems to be a psychological issue, is physiological condition reflecting itself on the mood and the behavior of the patient.

Yes, all your issues are genetically predisposed. It is where you can undertake nothing, it is as it is...

But when the body mass is in question, it is where everyone should be able to do something for his health, and that's what I insist on. Everybody can loose the weight. In my near surroundings, I have heard from the fat people the most diverse and most unbelievable explanations why have they got fat and why they can not loose the weight. And the truth is often very simple - the food is a source of pleasure and people are inclined to overeat. In my country, the wild country of Serbia, we have in recent decades more and more overweight people. Even the kids are overweight, in an amount of 30%. We are obviously catching up, but we need some more time to get to 67% (it seems to be a limit percentage for fat people, for any country, lol. The rest of 33% have health issues and can not get fat anyway.)

I am with you and firmly believe that, some day, your health problems will be the history!

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nadine111
nadine111
in reply to baraba

i'm sorry but i just have to disagree with you. weight gain with fibro is awful. it tends to be these lovely meds we take-what are the side effects-weight gain, weight gain, weight gain. i've had fibro for 15 years. somehow i have managed to be thinner now than 15 years ago when i worked 14+ hours a day and worked out 5-6 days a week. why? i hurts too much some times to eat, swallowing can be difficult,which is not good for me. i take a ton of vitamins to make up for lack of food intake but know i pay for it. most people with fibro don't eat properly since it's expensive plus so time consuming to cook healthy food. add weight gain from some meds...bottom line is that our life's are so very difficult. we need people to be understanding, to be helpful, to be kind. give it a try! maybe you know someone with fibro who could use someone like you to cook for them, shop for them, help them get up out of bed-offer to help instead of preaching.

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baraba
baraba
in reply to nadine111

We do not necessarily need to agree with each other, it is interesting to hear different opinions... What I have noticed in my own country, is - never blame ME for being fat, it is a consequence of medicines I take, of poor food quality, of processed food, of ... who knows what. I also tend to collect fat from time to time, especially in winter, when we celebrate a lot, but when I realize it, I simply reduce the food intake. It brings the result within a month or two. This way, I keep the body mass at the same level for the past 40 years (70 to 72 kg).

Of course, there are also many people who are not overweight and suffer on Fibro. It is not unusual. But in my close vicinity, everyone who is overweight IS ill, one way or another. The improvement of the body condition and the symptoms IS very significant when people reduce the weight, hence all my inappropriate suggestions. It is what can be undertaken by everyone, it is the simplest way to get better body condition. All the best to everyone!

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nadine111
nadine111
in reply to baraba

i'm a bit confused. i thought this was a fibromyalgia site. do you have fibro? another similar illness that pain is a main part?family or friends with fibro? if the answer is no to all my questions i just ask that you have more compassion for those of us who live a life of pain,fatigue, etc. your suggestions are very inappropriate and just mean. i just took my morning parkinsons medication so need to go decide if want to try to eat something or see if can go back to sleep whie my body deals with the nausea. i don't understand where you are coming from but don't care to try to get through to you again.

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Gooddaysagain

Thank you for your support, Nadine. I was starting to feel like the 8 year-old my mother told was fat, interspersed with the me at 63 she calls 'lazy'! She was so impressed when I told her how much weight I'd lost over the Summer. What I didn't tell her was that I'd lost nearly 30lbs without lifting a finger, or even getting out of bed. All I did was come off Pre-gablin and go onto Duloxetine. Changing meds cost me 6 weeks of my life, and is not a diet I would wish on anyone.

On days like today, when I'm too exhausted to feel hungry, I worry that I may be sliding back into the Bulimic teenager I became in response to my mother's bullying. (Gosh! I've not admitted that publicly before).

Having had everything 'bad' stripped out of my digestive system earlier in the year, I am eating much better. But, the red wine I couldn't face for weeks has made its way back into daily use as part of the "Mediterranean Keto" diet, along with 85% dark chocolate.

Does anyone else turn to wine when none of the meds touch even the edges of our pain.

thank you all for being there and not judging me! Dx

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Gooddaysagain

Thankfully, I've called down enough to respond without resorting to 'compliant' child told off by teacher.

Not all body weight can be controlled.

It is not just a matter of what we EAT, but also how well we DIGEST our good and how much we can METABOLIZE.

Speaking for myself, on 'normal' days (I guess none of us on here have what we would have called 'good' days anymore), I try to regard food as necessary fuel. I love cooking. Last night I roasted some chicken drumsticks (holding knife and fork without causing myself pain being a thing of the past!) In the roasting dish I put some onion and courgettes chunks (not too hard to chop, and can also be eaten with fingers). The baked fish was healthy and yummy. This morning my right arm hurts from slicing and my jaw aches from chewing. There is so much more to eating healthily when you have fibro.

Together with protein, veg, nuts, seeds and oils, I struggle through a fairly healthy mix of foods these days.

I have had to put a lot of work and research into how well I can now digest these foods.

Fibromyalgia, and the meds we have to take to placate it, play havoc with our ability to DIGEST it, from compromising our gut flora (and unwanted fauna!) to bouts of constipation caused by meds and even more meds to get things moving again!

As to METABOLIZING what does get absorbed by our gut, .... Again, both Fibromyalgia, and the meds meant to help, slow down or block the processes our cells use to make energy from our food.

I have 'invested' in amino acids, pre- and pro-biotics, healthy oils, vitamins, minerals, spices and enzymes to help all these stages.

If I weren't so ill, in pain and exhausted, I'd be bouncing with health (and rattling)!

Trouble is, life and its stresses, even its joys, take their toll on our bodies.

Yes, my poor broken feet hurt a bit less for not having to carry so much weight around. But, they still f****ng hurt when they get cold!

I'd love to think my CPS with Fibromyalgia, Post-viral CFS/ME, Osteo-Arthritis with Spondilosis, Arthritis of shoulders, knees, hands and feet, etc., etc., were all history. We try out best, but sometimes the world of pain is just too much!

Oops! Cat's just purred at me and put his paw on my knee. The sun's shining on golden autumn leaves. It seems my time to be angry and sad has run out for the day.

Gentle hugs to all, dx

P.S. Apologies for any typos. My hand hurts!

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