Sincere thanks for all the lovely peo... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Sincere thanks for all the lovely people who sent me a supportive message.

Sue1463 profile image
8 Replies

Overwhelmed by the kind messages I've received from complete strangers, restored a wee bit of faith back in my thoughts regarding the humans of society.

Had a busy stressful couple of days, myself and husband went to speak to a human rights lawyer but no luck. Can you believe everything that has happened, the money we have lost from selling our house £17k less than we paid three years ago, our business finished. Yet no one is liable to compensate us in any form. That was what we worked for 16 years down the pan, the sad thing is that was our children's inheritance. Came home deflated and feeling the pain of yet another door closing on us. Then I went to pain clinic, so I'm now to take pregabin x 4 a day and one duloxatine 60g one a day and they are starting me on antripline and cocodamol in between.

I've been in agony today my legs feel like there being stabbed with a thousand knives, and whole body aching and so tired.

So do you's thing I'm on ok medication.??

Any suggestions for the night leg pain?

Thank you

Sue

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Sue1463 profile image
Sue1463
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8 Replies
TheAuthor profile image
TheAuthor

Thank you so much for your wonderful message to everyone, and I am sure it is genuinely appreciated by the members of the forum.

I am so sincerely sorry to read that you are not eligible for compensation from anywhere, it genuinely does not seem right or fair! I genuinely hope that your pain levels decrease for you soon.

I am taking Pregabalin and Cocodamol, but I cannot take Amitriptyline so I have a derivative called Nortriptyline. There is a drug that you could discuss with your GP or Medical Specialist called Baclofen. My wife uses this for night time pain, and she has found it moderately effective. I want to genuinely and sincerely wish you all the best of luck. Please take care of yourself and your family.

All my hopes and dreams for you

Ken

Shadows-walker profile image
Shadows-walker

Hi sue , this might sound simple but , I am talking vit d now and folic acid and I have a nice soak in Epsom salt before bed , I am also on 120 mg of dulexatine, 200 mg hydrochoquinne, co codamol 2x500mg as required,and may be adding magnesium to the mix , I have MCTD , fibro ,sjorgrens , raynaulds , Gilbert's , pyrosis, hair loss , and a few other things , but these things are all brought on by environmental triggers and Ll auto immune, have you been tested for vit d , levels , the body acts very strangely when you have been put through extremely stress and you have been strong for to long , I have gone back and read your post from 3 days ago , and I want to wish you and your family well , I would suggested you be kind and gentle with your self because it sounds like the world has been a very hostile place for you for some time ,

Try Epsom salt the magnesium makes a big difference to handfuls in a bath full of war to hot water for 20 mins before bed , and get you vit d levels checked , it is going to take time for your body to recover from the stress it has been put through ,

Big hugs

Shadow xx

Agora1 profile image
Agora1 in reply to Shadows-walker

Hi Shadows, I noticed that you said you have been diagnosed with Sjorgrens.

I have felt for a long time that I have this as well. What are some of the symptoms, if you don't mind my asking, as well as what tests can be done.

Thank you. Take care.

Shadows-walker profile image
Shadows-walker in reply to Agora1

Hi sue , dry eyes , gritty eyes , sore eyes , tired eye , dry mouth , always feel thirsty , itchie ears , tinitus, goitres , sores in mouth and nose , fatigue , trouble swallowing,

Tests

Eye specialist, they do litermis paper test t see how much fluid in eyes

Poss block tear ducks ,this depends on opthamoligist ,

Oral consultant , lip biopsy, think carefully before having this done ,

As I now have no feeling in left side of bottom lip 🙁

Glands can be inflamed .

Rumatolagihst bloods.

I have to hot compress my eyes every day to remove build up of gunk in tubes round eyes to stop infections , I bearly wear makeup any more as this upsets my eyes to much .

Good luck

Chris X

Agora1 profile image
Agora1 in reply to Agora1

Thank you Chris. It doesn't sound pleasant at all. I'm sorry.

My best to you. Take care.

Janet28 profile image
Janet28

Bless you Sue, my God what an aweful time you have had and I feel so sad for everything that's happened to you. How can people be so cruel I will never know. Wicked evil, scum to do that to any human being.

I think to myself you are one strong lady to have suffered all that Injustice and still be here telling the tale. You are lucky to be alive or not have head injury after what they done to you.

It is true what they say about trauma being a possible cause of Fibromyalgia, they also say maybe virus or an operation.

Like probably most people in this day and age I have suffered all 3 so it's very difficult to pinpoint what causes it but personally to give my own opinion on the matter, I think PTSD is a very typical reason to give you all this pain you are suffering.

When you are so unhappy and so stressed and your head is in so much turmoil it's no wonder that this will eventually spread to your whole body and once it's there and made itself at home, there doesn't seem to be anything that will get rid of it.

I take Pregablin, Amitriptyline, Solpadol and Quinine Sulphate, so similar concoction but I have had lots of different meds over the years and everyone is different and what suits one person doesn't suit another so it's just trial and error and what makes you feel better and it takes time to get that right really.

Going back to your court case, I would have thought because of having such a strong case and somebody to say your medical condition was caused by what happened to you, can't you appeal ?. It seems so unfair ! Another total injustice !

A similar thing happened to me where, my husband was virtually a millionaire and I left a 25 year marriage with practically nothing, I'm not going to go into the whole storey because its to long and I've buried it like you do eventually but he physically attacked me, tried to kill me on one occasion & i often think, yes this is definitively a book, maybe we should get all the people together to write a chapter, I'm sure it would make us all rich lol.

Well Sue I really don't know what else to say to you except I'm so sorry for what's happened to you and I hope you get relief for your pain and there is always so many lovely people to talk to on the forum & you can nudge me anytime.

Sending you lots of love & hugs

Peace, love & light

Jan xx

jackie4ball profile image
jackie4ball

I am so sorry to read what you and your family have been through no one deserves that kind of treatment and i hope things settle for you soon. Getting meds right can be a long process as some have already said what works fir one may not work for another.

As regards writing a book i have been told many a time my life reads more like a real life episode of Eastenders which is why i never watch the soaps as have enough drama in my own life to be watching something thats not real.

I can truly understand you moving i have been trying to move for over a year as i live every day in fear in my flat which is a council place and i have spent a year trying to fight every dept to get me moved but still bidding when something comes up which i am allowed to bid on. I am currently house sitting at a friends just for a break but my anxiety and panic attacks are at a high level because i know i have to return in a couple of weeks to my place which has become like a prison to me. I do like the saying that youbhave put at the top of your pist as it seems to sum myself and probably many others very well.

I hope you find some peace soon and the meds start to help. Take care

Sending you some gentle hugs

Jackie

Hartleyhare2 profile image
Hartleyhare2

Hi sue youve had it rough in a short piece of time. We too lost two houses, cars and a business. By some piece of luck we ended up in a small housing association house on the edge of our home town and a short walk to our boys school. You can imagine how much stuff we had so we kept what we needed and wanted. We are still ebaying, or car boot booting other stuff, taken a break for winter and friends have lent storage space in sheds garages etc.

I have fibro and diabeties but also diagnosed with Restless leg Syndrome. This is like pins and needles and spasms running through my calves and thighs as well as twitches in my bum and randomly any where else. I get the pre cramp pain but in doesn't develop into full cramp. The area about an inch above each knee can be agonising. This is at late after noon or during the night. My Dr has prescribed me two 5mg tablets for lunch and evening sometimes I only need the later one. About five months ago I started taking a magneseum supplement as well. Both of these have reduced my pain. Perhaps another chat with your doc as typical of this illness what works for one doesn't always for a fellow sufferer.

Is the business something you can sell on as a going concern with a customer list. Or perhaps something you can do on a much smaller scale?

Rember when your at the bottom there is only one way to go in small bite size chunks!

I wish you the very best, despite everything and the unwanted changes, I still have my family and that's all that really matters.

Best wishes

Patrick

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