Nothing new.... but!

All your fibromyalgia experiences, questions and answers.

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Nothing new.... but!

Postby Tel1 » Sat Jun 07, 2014 10:05 pm

Hi All

I was feeling ok today until I went outside to hang a duvet on the washing line today, and my ARMS!! it felt like as though I had been lifting weights for the first time... I have had this aching pain all day.... has anyone else had this happen like this out of the blue?
I thought to myself, oh god :yikes: it's getting to a stage where I wont be able to do anything anymore without something happening unexpected.... what a life eh :cry:
I know most of us are lucky to a point that we have arms legs and feet and not in wheelchairs, but my god, this Fibro lark is just
sometimes too much, it just seems one symptom after another.. One of my dreads as of late has been waking up in the middle of the night as though I am having a panic attack... it is dreadful and such a shock to the system... I went to my GP and told him about it in November last year and he sent me to the Thoracic Medicine dept and they diagnosed me with Sleep Apnoea..... then I read an NHS article saying that Sleep Apnoea and Fibro go together, in other words ( they say) that because Sleep Apnoea is part of Fibro and each individual doesn't get proper sleep because of the unknown waking up and stopping breathing even if only mild, it is this that gives people ( not all people ) with the tiredness and depression/aching/pains/ off balance/panic attacks.... so I just thought, oh well, I might as well just give up living as all these damn symptoms, just make you feel so down as though there is no way out of it.. :yikes: :yikes: I have posted previous things on here and explained that I have been tested to death for nearly every illness going with MRI CT scans Xrays, blood tests galore and nothing comes back wrong ( thankfully) but then again look at us all on here, just nothing seems to help us.... :crazy: but we all live in hope....
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Re: Nothing new.... but!

Postby DRM » Sat Jun 07, 2014 10:26 pm

Fibro is a nightmare cos you never know where & when it's gonna strike next. My problem is my wrist ATM, and that's new for me. Don't give up, we can't let it beat us! Hope you feel better soon x
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Re: Nothing new.... but!

Postby Jacky55 » Sat Jun 07, 2014 11:42 pm

Sometimes it seems there will never be an end to all the different symptoms. For example, I have just got over a period of being so clumsy, and feeling muddled and so forgetful :-? . I woke up today feeling a lot brighter, and things seemed clearer, only now my hands ache and I've got a stabbing pain in my back! Who knows what tomorrow will bring. We can only keep going and not give up. Being able to communicate to each other and support each other is really comforting. Hope you're feeling better soon. Best wishes. X :-)
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Re: Nothing new.... but!

Postby dotty lotty » Sun Jun 08, 2014 5:25 am

It is comforting to know that others wake up and think where did that pain come from and that you are not going mad. Doesn't make it any less painful though. :teddy-bear:
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Re: Nothing new.... but!

Postby migrembe » Sun Jun 08, 2014 8:34 am

I suffer quite badly from nightmares and night terrors, which are similar to the panic attacks that you seem to be waking up with. I live alone and so waking up feeling like someone is touching me, is in/on my bed or in my room is very scary. I always make sure that there is a light nearby, off of course, because once i switched it on i can clearly see there is no one there, but it can take a little while to go back to sleep. These night disturbances can be linked to migraines. Most people wrongly presume migraines consist of the headache and sickness but there is more to them then that.

As for sleep. It is known that the brain goes through cycles of light and deep sleep, the problem with the fibro brain is that it rarely if ever goes into deep sleep, it isn't always related to sleep apnoea.
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Re: Nothing new.... but!

Postby humphreys » Sun Jun 08, 2014 10:36 am

Hi Fibro Friends. I have the same problem with my hands and arms, I live on my own so I have to do everything myself, I feel sometimes I can't go on like this, I hate it, I get so mad with myself as well. At night I put my feet up, and my kness feel like they have been broken, the pain is just terrible, I find it very hard to get through the day. I feel as if I'm wasting a day because I can't do things I used to do. I so hate this fibro.

The only good thing is I can sleep, once I'm sleeping nothing can wake me up, but by the time 2 or 3pm has come round I could go back to bed.

Wishing everyone a good day.
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Re: Nothing new.... but!

Postby Mel2babiesbenson » Sun Jun 08, 2014 11:30 am

Hiya not posted a reply before so hello lovely people....I keep getting new or different symptoms but it's not a degenerative disease....I read a lot and I have read nothing to suggest this is the case so if u have had for around 5 yrs then I think symptoms will be well established obviously other medical conditions and age will pay a part in feeling things even worse but I am trying to stay positive and not let it rule my life because I have 2 toddlers. I can't keep up with them or run in the park and it kills me to have to take pain killers morning noon and night maybe I have only read evidence and taken in the bits that have ma me believe it's not gonna get any worse just have to deal with the copious amounts of pain I'm in at the minute.

I'm sorry to blurb and feel free to argue your point back but come on let's pull together and try to stay positive about this. It's bloody hard work I know and I have days where I give in to negativity it's impossible not to but we have to start a fresh each day xxxx take care lovelies xxxxxxx
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Re: Nothing new.... but!

Postby migrembe » Sun Jun 08, 2014 1:11 pm

You are right FMS is not a degenerative disease as such, however when you have had it a number of years and the pain is so bad that you ability to function as a normal human being (i use the term lightly) then the body will begin to fail all on it's own. However keeping positive and mobile is a good thing, but some like me also suffer from chronic depression and chronic fatigue syndrome. It become a vicious as pain leads to immobility and immobility leads to depression, which leads to pain and so on and so forth.
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Re: Nothing new.... but!

Postby Mel2babiesbenson » Sun Jun 08, 2014 3:30 pm

I agree with you it is a vicious circle and depression is such an isolating illness its awfull like i said i am by no means positive all the time its just in this forum i read very little upliftin positive threads and i just wanted to hooefully bring some light to the darkness not judgement or any belittlemnt of fibro or any other invisible illness because that wont help anyone..i find it hard to smil throught the pain the headaches the stiff joints the lack of sleep but i will re read my post in my darkest hours to remind me how it can be cos today at least for a few hours i have a tiny break...albeit i am on tramadol and codeine lol but if i have to do it i will xxx i want to hug everyone and tell them it will be ok but maybe thats just what i want to happen to me?!!! Xx
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Re: Nothing new.... but!

Postby denys » Sun Jun 08, 2014 4:15 pm

Just keep thinking that one day they may come up with a solution to all of this, FM costs the NHS a bundle and so research is going to happen at some point and not the little piddly stuff they seem to be looking at now.

We can never predict whats round the next corner so hang on in there and try not to stress and worry as we all know where that leads us :-D :-D :-D :-D
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Re: Nothing new.... but!

Postby Tally1068 » Tue Jun 24, 2014 7:35 pm

I have no idea where to put this post, but reading some of the stress/addiction replies on here, struck a chord and, forgive me, I just needed to sound off about what seems to me, to be the blasé attitude of a lot of the so called "specialists" and locums who don't know your history from Adam.
please would you move it, mods if it's in the wrong place, it's a bit of a rant and, as always, just my own thoughts and feelings which others may completely disagree with. :oops:

Like most others I went through years of not being diagnosed, and in tears thinking I was a hypochondriac. I found it quite a relief when I was told it was FM. I could read up about it and manage my life accordingly as I'd done in the past with other conditions such as COPD.

My philosophy is to not get stressed about things- Accepting my condition(s) is much easier than the days when I would fight to be "normal" I'm not, so going with the flow about things I cant change makes for a calmer life. I need a stairlift and a wheelchair? I buy one. Anything that makes my life easier is right for me. I have no family and live in a very quiet village, not exactly a hub of activity, but it does mean there aren't the facilities found in a town, for example.
It's made somewhat easier because I'm a pensioner and have enough money to pay others to do everything. I seriously don't know how people on limited incomes cope with the expense of being disabled and my heartfelt sympathies go out to all those who are struggling.

Generally that was working, but in an 8 month period I was diagnosed with glaucoma/two 12" tumours in my throats- I presume duodenal ulcers, though I very rarely get much information from the medical profession and a canelled cataract operation as my blood pressure was too high.. It's at times like this that I feel helpless. I cared for my mother for years and would have fought tooth and nail for her. Sadly I cant do it for myself.

I've been a chronic asthmatic since I was 13- back then the only treatment was steroids. Great but 50 years of steroids have resulted in where I am today. Bedbound for the last 6 months because the severe osteoporosis has crumbled my bones, and a simple slip that I thought had meant a painful bruised muscle was actually a broken spine. It was 3 months before anyone suggested an X Ray quickly followed by an MRI. Why? Am I really not worth treating? Don't they believe me when I tell them the amount of pain I'm in and sitting/walking was impossible. It was 6 weeks before I could sit up.

My question is how do we do our part in trying to deal with stress when the very people who are meant to help us are negligent and unsympathetic. I had a breakdown at Christmas as I couldn't take any more of the extreme pain and the feeling that no one cares. I haven't walked for 6 months and am in constant agony with my arthritic shoulders as I try to get to the bathroom with my walker.

The trouble is that mentally I haven't got the energy to kick up a fuss - getting to see a doctor is dependant on my friend who has a car and can push a wheelchair. I'm on tramadol, amytriptillin and all the usual medication and I don't give a damn about being addicted. I've been taking benzodiazepams since I was 13 ( in the 60's they were prescribed like sweets, no idea how horrendously addictive they were and the withdrawal from those is too horrific to contemplate). It's quality not quantity of life that is important to me now. Likewise prednisolone. After 50+ years my body goes into meltdown if I try and get off them. I cant "pop into the surgery" for a blood test - everything has to be planned and thought out. So many of the young specialists I've seen have no idea what life was like in the days before inhaled steroids and nebulisers. Why should I be responsible for their ignorance? I cant just "reduce them" my COPD flares up and I really cant cope with coughing up thick phlegm for hours, fighting for breath.

I would love to see as much awareness of fibromyalgia as cancer, for instance. Heaven knows I've turned from a pretty positive thinking person to a bumbling wreck scared to do anything. So, as I lie in my bedroom sweating buckets,(sitting causes severe cramping) I'm scared to bend down in case another bone breaks. It isn't living, it's existing. With a bit more awareness and compassion from the medical profession, I'm sure the stress could be halved. The only person who was a gem was my family doctor who I've been with for decades. Unfortunately he retired last year so I have to build a relationship with my new one.

I had one locum who my friend called who stood at the end of the bed and, without even examining my back, sneered at me and said "So you're the junkie who's taking too much medication" Damn right I was. But the old Tally, who in my teaching days, would have torn into him instead just burst into tears. It still makes my blood boil. Just what you don't need when you're at your most vulnerable, in extreme pain and frightened silly. I had the breakdown just after this. All so unnecessary when a little compassion would have worked wonders.

I'm off for another bone scan tomorrow to see if spinal surgery is an option, but the prognosis isn't very encouraging. Still at least I haven't been forgotten and it's an afternoon out. :lol: Adapting to life in a wheelchair is going to be hard, I haven't allowed myself to think it might be permanent yet. and "yes" I may throttle any person who tells me that thousands of people cope in wheelchairs. :evil: So will I.........eventually.

Sorry for the ramblings. It's the first time I really felt I need to get this out of my system. I'm having a real pity-party aren't I? Thank goodness for my little dog and the wonderful girls who walk him and love him as much as I do. :-P He's such a comfort even though he's got a new hobby. He's the one standing on a horse in the Pet thread. He seems to be at the Stables nearly every day.

Ho-hum. Thanks to this forum just to know I'm not alone.
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