All your fibromyalgia experiences, questions and answers.

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Postby emma83 » Sat Aug 30, 2014 6:20 am

I am really struggling at the moment. If you have read my posts before you will know I'm new to fibro. The hand pain I get at night is getting me down so much now. I've now been signed of work for a couple of weeks but I'dich rather be at work but lack of sleep and typing I just can't but I also can't really afford just to get SSP :-( nightmare.

I feel very alone at the moment. The few friends I have told, not all get it as they wouldn't cause dramas in my life with petty arguments etc - I have tried to explain I get anxious and stressed more easily at the moment.

What support is out there? Should I try acupunture ? I've just had my amitriptyline upped to 30mg but it is having no effect on the pain yet :-(

Any good books? Support groups? Alternative treatment people recommend?
I feel really low as I can't belive this has happened to me as I'm so energetic and the live and soul, now I feel about 90 years old.

Be grateful to talk to anyone is same boat (feel free to PM me) as I feel very alone right now. I have a supportive mum but live on my own
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Re: Struggling

Postby LizzyMac » Sat Aug 30, 2014 6:33 am

I can relate.

Sometimes I just cry because it's so unfair, and too many of my friends just don't get it. I'm fortunate that I work from home, but I still have deadlines and stress, and too often, people are like, well just take naps if you're tired, you work from home! And I'm like, okay, but I do still have to do the work, you get that, right? And if I don't work, I don't get paid, so there's a constant pressure to feel better than I do. Plus, naps don't really help. I nap, but I wake up exhausted anyway, so what's the point?

I've actually found this forum to be a great support group. A lot of the replies to posts come on Facebook rather than here, which I find a bit odd, so I just make sure I get FB notifications for any posts from the group, and I see more replies.

There are also other Fibro groups on FB. I don't post on them, partly for privacy, but it's nice to see that there is a big community of people out there who get it. That in itself keeps me from feeling so alone.

*gentle hugs*
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Re: Struggling

Postby dotty lotty » Sat Aug 30, 2014 6:47 am

Hi Emma sorry you are having a dreadful time just now.
I find this forum a great place for advice, support or a good old rant.
Are there any support groups in your area?
Maybe your GP could refer you to a pain clinic and a pain management course. A TENS machine may help.
I tried acupuncture and it helped for the first few sessions but then pain returned.
I also like going swimming the water takes your weight and it is lovely.
Good luck and feel better soon :teddy-bear: :teddy-bear:
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Re: Struggling

Postby Linart » Sat Aug 30, 2014 6:56 am

I can relate to you too . I've spent years with arthritis and have had a hip replacement, and thought all this pain was due to arthritis till I went to a pain clinic and they diagnosed Fybromyalgia. I had put my foggy brain down to my medication as I have thyroids and blood pressure problems . I feel better knowing what is causing all my symptoms but there is still no cure. I am on Tramadol and Amytriptiline but its not helping.

I feel very alone and I have a husband but nobody understands. My so called friends dont want to know as I keep turning down nights out etc. They don't understand that I can't do these things. I'm so tired all the time and had to give up work years ago. I was on benefits that ATOS have now stopped, and i have had to fight through the courts to try to get them back. I've been in floods of tears in front of the judge but still they say I am able to work. I've been to a pain clinic once so far and am back there next Friday so I'm hoping they can help me. Its really hard but try to stay positive. Linda xxxx
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Re: Struggling

Postby lisa holden » Sat Aug 30, 2014 8:01 am

Hi emma i have tried every pain killer on the planet over the past 5 years because of fibro. i am having injections in my hip to reduce swelling and i was wondering if you could have those injections in your arm, typing does set of strains as does my job. exercise is great for forgetting pain even if it is just a walk. im 38 and feel 100 but i just want to warn you as ive been sitting around in pain for a year and its siezed me up more. you are not alone, there are support groups around xx
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Re: Struggling

Postby stephdawn » Sat Aug 30, 2014 8:32 am

Hi Emma and every one else. I was diagnosed with fibro about 14yrs ago and was just pumped with pain killers and at that time our condition wasn't really known as much as it is today.

I'm only 46yrs old but like yourselves I feel a lot older. I have a husband who had to give up working nearly 3yrs ago to become my full time carer. He still finds it hard to get his head around my condition. My mum supports me as much as possible but she is a full time carer for my dad. I can't even count what friends I have on 1 hand so I feel very lonely to.

My new DR is fantastic. He has changed all my meds and put me forward to the pain clinic and to see a fibro physio as well. It sounds like you need to go back to your DR and ask to be put on some form of ant-depression meds. They have helped me. I won't give you a list of my meds as there are about 26 different ones that I take every day, although I would recommend Mirtazapine and Duloxetine as an anti-depressant . And for pain I take 1500mg of Gabapentin spread over the day. I also take 50mg of Amitriptyline at night.

If ever you need to chat or rant and rave you can always find me on face book under Helen Mallett and you can pm me any time. I know how you all feel. Take care. Hugs coming down x
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Re: Struggling

Postby Garyl » Sat Aug 30, 2014 8:33 am

Hi Emma found some gloves on Amazon thats supposed to help painful hands awaiting them to be delivered as i type they are supposed to work and can be worn day or night, will see if they help me and will post a message after a few days of trying them
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Re: Struggling

Postby Linart » Sat Aug 30, 2014 10:05 am

Gary if they are Imak gloves you are waiting for they are very good. I bought some last year for the arthritis in my hands xxx
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Re: Struggling

Postby kezza1 » Sat Aug 30, 2014 11:02 am

I went back to my doctor yesterday who has signed me off for two weeks but am on my last warning at work first time I've been of with fibro though do I take the two weeks off or just ignore it and go to work even though I don't feel well enough?
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Re: Struggling

Postby Garyl » Sat Aug 30, 2014 1:14 pm

These are the gloves i have and are very good only after 30 mins i finding a improvement ... UTF8&psc=1
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Re: Struggling

Postby FluppyPuffy » Sat Aug 30, 2014 1:23 pm

Sorry to hear how things are for you at the moment emma :grouphug: :grouphug: :grouphug: Most of us have had, and still do experience similar times along the way, so there is an awful lot of understanding of what you're going thru.

Things appear somewhat bleak at the moment, even overwhelming, but they can become a little lighter and brighter as you progress further along in your FibroQuest.

Altho you would prefer to be at work, your GP clearly thinks somewhat differently, so try and use the time you have been signed off for to try and get yourself a little more settled about things.

Wrt work, typing etc, could you look into whether there are some suitable ways to give you some additional support, such as a brace/splint??? You should be able to find info out from local chemists or retailers of disability aids. If they haven't already done so, you could talk to your employer about more ergonomic equipment for you, such as keyboard, mouse, gel wrist support/mouse mat, chair, desk etc.

There are a number of meds that can be used to help manage FM, with you mentioning just Amitriptyline, is this all you are currently on??? If so, you could talk to your GP about what other options there are that can be taken alongside Amis. Have a looky at this Linky for a little more detail about things.

You may be able to access a number of acupuncture sessions via a referral from your GP. Same with accessing Pain Clinics, who may be the ones to offer you acupuncture.

For Support Groups, have a peek here and see who is in your area.

It is difficult for others to understand what life can be like with FM in the mix, and for some, well it's just too much like hard work. There are the ones tho, who will try and do their best for you, and sometimes It can be a real eye~opener as to where that support comes from.
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Re: Struggling

Postby humphreys » Sat Aug 30, 2014 4:06 pm

Hi, I'm so sorry you feel like that, I was once a typist and a VDU operator, I get very stiff and sore fingers in the morning, I know it's going to get worse in the winter. I just try to keep going, not rushing, just take my time. But your not on your own remember that.
I hope you fined some relief.
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Re: Struggling

Postby dazzleship » Sat Aug 30, 2014 5:00 pm

hi Emma

sorry to hear you're going through a bad time. I can relate as I've been struggling myself due to things getting worse for me lately so I really do sympathise. :hugs: it is incredibly difficult to get used to the way fibro affects you and - as you've said - to get people who don't suffer from it to understand.

I would definitely recommend a tens machine (as someone else suggested) - I use one when my legs get really crampy and it 'interrupts' the cramps and pain and really does help. I aso use it on my back and shoulders sometimes. as I only take cocodamol and no other fibro medications I find a non-tablet pain reliever to be really good :-)

another suggestion I have for you is swimming- if you can of course and if you like swimming 8-) I've recently started doing this with hubby and although I can't actually say I can swim properly (I use a 'swim noodle' or 'woggle' as its called) I find the support of the water really good, it relaxes me and eases the pain.

hang in there though. this forum is very good - it's helped me a lot already and I also find solace in helping others. you will get through this, just take things slowly.

oh and - listen to your favourite music or watch something funny on TV - anything that you enjoy that makes you feel good will help to distract you from the negative feelings your having.
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Re: Struggling

Postby steve_728 » Sat Aug 30, 2014 5:58 pm

hi Emma, you aren't alone. I recently had to give up work as my employer the DWP don't get it at all. Most days all I got was you dont look ill, or you are still young and shouldn't be like that. Great eh?
As for gloves and splints etc, I have both and these were supplied by physio at the hospital I attend. I also have had my feet moulded for inserts for my shoes to help with pains in my feet. These things help but sleep is very limited and the feeling of total exhaustion is there frequently for me.
I fought to be seen by a Rheumatologist at a hospital that specialises in all forms of Arthritis and joint replacements. I have had a knee replaced and it is looking like a hip replacement is imminent also.
I would suggest you use the NHS website to see if there are any hospitals within a reasonable distance to you that specialise in Arthritis and get your GP to make a refferral, use choose and book I find it invaluable!
Feel free to pm me anytime if you get down and just want a chat and I am on Facebook also
Just keep your chin up and remember you aren't alone!
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Re: Struggling

Postby Sari mitchell » Sun Aug 31, 2014 3:19 pm

Hello there fellow Fibro friends.
I feel so bad for people who are first experiencing this horrible illness and are feeling confused and irritated and totally helpless. I too felt that way however, I was diagnosed with it 16 years ago and if back then they had all the information we have now, I would not have suffered so very badly. I do still suffer physically however,not nearly as bad as I did and, I am so much more stable emotionally then I was when I first got this demon. I believe that our mental state has so much to do with our pain level, for me, if I am stressed out and upset, angry, depressed, which is OK for we all have been there, my body begins to take on an enormous amount of extra pain then usual. I know it is important for me, to think good thoughts as my dad would say, get educated and get to know people who are positive in my life and not dis-believers who put me down or Judge me (Which I have experienced for years from not only so called friends, but from doctors as well)

. That was the worst for me, the suffering that my so called friends, and even some family members put me through until I was able to remove them from my life. They didn't support me then, so I don't have them in my life now. Meet other people who have this illness and stay connected to these sites. It really helps. I also want to say that you MUST be careful ]when you first are told you have this illness for it mimics many other illnesses. It is great to read up on that for if I did, I wouldn't have had surgery on my ankles and hands which they mis diagnosed me with because these frigin doctors had no clue what Fibro was. I had ankles that hurt and were numb and throbbing and I couldn't walk to well. They said that my arch was bad and that there is a real simple surgery that has a 99.9 percent success rate. I WAS THE 1 PERCENT THAT WENT WRONG. It wasn't my arch or anything like that it was the Fibro. If that wasn't bad enough, The surgeon put implants in my ankles and PUT THEM IN THE WRONG POSITION. Go figure. I have had to use a cane and a wheel chair since the surgery 4 years ago for it hurts too bad to walk much at all. I was told they need to come out but nobody wants to touch a surgery that another doctor already screwed up. I also supposedly had very severe carpel tunnel syndrome for my hands hurt so bad and they were numb at times and tingling and just very bad. I had tests done and they said surgery would cure this. IT DIDN'T for it wasn't carpel, it was FIBROMYALGIA. I am so glad I only let them do 1 hand until I found out that Fibro can cause this, for my hand, it still hurts, even more now I believe then before. STAY AWAY FROM SURGERY UNTIL YOU HAVE NUMEROUS OPINIONS AND TESTS DONE. I didn't know better back then and I am paying more now for it. Please forgive me if I went on too much however, I feel the need to help others and to let all of you know the mistakes I made so you won't have to suffer and go through what I did , and still do today. I feel much better knowing that there are people out there that care and understand. That is a big comfort to me. G-D Bless You All.
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