Fibromyalgia

[Mango07]

Hi i have been diagnosed with fibromyalgia couple months know. Struggling bit, some morning I wake up and can't move during the night I turn over my bones feel like they are being crushed!!!! Pain you can't describe it. People don't really understand the pain I am in . Sick sometimes after eating?? Drag my leg as well. If I am walking dog my leg can go? I have stared yoga swimming like doctor said??? Trouble is I can't move next day?? Don't understand it. Feel quite low with it. Just put mask on, can I get any help benefits ??? Say if I can't do my job ??

[rosewine]

Just like to say welcome. I think when we are first diagnosed with fibro it can be a very frightening experience as the symptoms can be so diverse. I am not sure whether you are on any medication for it. As you are in such terrible pain have you asked to be referred to a Pain Clinic as they can often give helpful advice and suggest medication that might help.

I was the same as you especially in the first-year as I found first thing in the morning very difficult. I found that lying in bed and doing very gentle stretching exercises before attempting to get up made such a difference. I used to feel as though every bone and muscle was aching and stiff. When you feel a little easier gently massage your muscles and then get up. A shower as hit as you can stand can also help with some muscle rub.

I also asked to be referred to a physio who gave me some exercises. Some made the fibro worse so I dropped those but kept the Ines that strengthened my code as I found when I had been doing them about a month that it really helped my posture and walking. He also referred me for hydrotherapy, needle sccuouncturr and an occupational therapist.

You are going through a kind of grieving process for hiwnyuh were before and it can take time to work through all the emotions. I can say for me there has actually been one plus to fibro as I was always rushing here and there and it now gives me time to smell the flowers.

Have a look at our mother site Fibromyalgia Action UK as there is alot of really useful information on treatments and symptoms.x

[Dizzytwo Moderator]

Hello and a very warm welcome to the group Mango07

It can be very hard for friends and family to understand Fibro it is a very complex and frustrating illness that's for sure.

You may like to take a look at our FMAUK website it has loads of helpful information. fmauk.org

You also may like to lock your post to keep it private to this community only. The link below will show you how.

healthunlocked.com/fibromya...

This link will point you towards some helpful links if your looking into benefit options

healthunlocked.com/fibromya...

If you need any further help please just ask any of our admin. I hope you have a pleasant evening xx

Momo

[Dinkie]

Hi and welcome to our little club that nobody actually wishes to be in. You are probably still adjusting to the label given to all your symptoms. It takes time to come to terms with it. Hopefully it didn't come as such a shock as it did to me. Diagnosis came about 3 yrs ago after being backwards and forwards to hospitals, GP etc since 1987. Remember you are still the same person you were before the diagnosis and it's just a label.

As you will find out, fibro is different for all of us - what works for one may not work for another so it's a case of trial and error.

I found I could not tolerate prescription meds so I had to find alternatives. For me, a totally no processed foods and no refined sugar diet works relatively well - boy oh boy do I notice if I stray from it. I use various supplements including vit D. Lots of fibro folk find their vit D levels are really low. Worth getting a blood test if you haven't had one already. Low Vit D does make muscles ache. Very gentle exercise can help. Also I have regular, as and when I can afford it, chiropractor and hypnotherapy treatments. Epsom salt baths also help. Some find tens machines help too. Hot water bottles, wheat bags etc all have their place.

Now the hardest one for me - pacing. You will have to learn to say no to things that are going to result in a total wipe out for the next few days, unless of course the activity is something deemed worthy of the consequences.

I managed a full time job until recently. I now work part time after a reasonable adjustments meeting.

You may well be entitled to benefits if you cannot work. Have a look at the various posts on here about ESA job seekers, PIP and the like. I don't claim benefits so admit to having virtually nil knowledge but no doubt someone on here will guide you otherwise you can always contact Janet our benefits advisor.

Chin up, we are a generally happy little band on here so any questions just post and someone will reply. No questions too silly because you can bet yourself that someone has either thought it or asked it before.

[Mango07 in reply to Dinkie]

Thank you x

[Hidden]

Hi, There's a lot to take on board with fibro, the symptoms are far reaching and constantly varying. It's not life threatening but certainly life changing.

From the time of waking, that's if l get to sleep at all, to the time of being able to move enough to get out of bed, (bed in my case means a recliner chair as given up trying to sleep in a bed), it may take anything from one to two hours. l used to think that an elephant had been sitting on my chest all night.

We get depressed on top of the symptom of depression. The list of symptoms can be as long as your arm but be careful as not everything you are suffering can be placed at the foot of fibro. Never feel like a hypochondriac ...always see a GP if a new symptom raises its ugly head as ignoring it could have a long term effect. GP means exactly that.. a general practitioner, so don't be afraid to ask for a referral to a specialist. Beware of painkillers, look up Fibrin to see what they do to our bodies. l stopped all pain killers 6 months ago and now use more holistic remedies such as turmeric and magnesium and don't feel any the worse for it.

No, people don't understand our problems or the way of life we have to adopt. Understanding fibro is something that even the medical profession aren't privy to, which is why some of them say to patients, "lt's all in your head". They need to try and walk a hundred yards in our shoes, never mind a mile. l wonder whose head it would be in then!

Take heart, us on the web understand and it's not all gloom and doom. Your sense of humour will quietly take over, especially where fibro-fog is concerned. Just be careful not to over do it on your good days...which you will have. Pacing yourself in very important. I only attempt one sort of activity of about 2 hours per day other than just the basics that living requires. May hope and happiness be yours. J. xx

[ruthmel1]

welcome. Others have given you the same advice I would.I've had it 15 years. As far a benefits go,if you need personal help with washing/bathing/cooking etc you can claim PIP.The process is long and daunting and they are good at refusing you at first so keep on appealing etc also if you cant work you can claim ESA.The best place to go for advice is a web site called Benefits and Work. If you pay £18 you get access to all of their advice booklets on how to fill the forms out.I found it invaluable. It makes the difference between succeeding or failing with the claim. (I hav eno personal interest in the site may I add!). If you have a local Fibro group they often have a group membership to Benefits and Works and you can get the booklets for free then,I give out and send e-mail booklets for my M.E/Fibro support group.