I have numerous health issues ranging from hearing problems, Non-Epileptic Seizures (PNES), Migraines & Tension Headaches, Irritable Bowel Syndrome and Fibromyalgia.
Hi, I am a new member and looking to ... - Fibromyalgia Acti...
Hi, I am a new member and looking to gain more knowledge about Fibromyalgia and its numerous symptoms. I am hoping to apply for PIP as well.
28 Replies
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Hi and welcome to the forum.
I've was only diagnosed with fibromyalgia last January but have found this forum invaluable for info and for support, and laughs too. I'm sorry you have been diagnosed with fibro too, on top of everything else. There are many knowledgeable people on here so if you have any questions someone will be able to help you.
Have you checked the mother site? It's at fmauk.org lots of good information there too. 
Just to say welcome as Hidden says our mother site has some great information. If you have any questions I am sure someone will be able to help. Going to try and settle down now or I will turn into a pumpkin, already feel like a Zombie. Hope you have a good night. X
Hello and welcome to our forum.We offer answers to questions , allow you to vent and make you laugh!! Hope you enjoy, Peck.😊
Hi fellow cat lover,
Welcome. There're a lovely friendly group here. You'll get lots of support and plenty of laughs.
Aishah
Hi DerbyshireDragon75
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I can see that you have been given the link for our mother site, FMA UK it is well worth checking this out for Fibro information!
I am so genuinely sorry to read of your suffering and struggling and I want to sincerely wish you all the best of luck. Please take care of yourself.
All my hopes and dreams for you
Ken
Hi DD75,
It's is good to get as much info as you can for various good ideas for help with every day life but regarding the PIP forms get the help of a citizens advice worker or a fibro group volunteer as they know exactly how to word things in an appropriate and professional manner as they have access to the FSA guidelines which the PIP people will use to assess your claim, hope this helps you...
God bless you
Good morning and welcome.
Im not around much at the moment. iam trying ti get the house straight after having new windows fitted and its takina all my energy.
so see ya when i see ya. 
Sue
Hi dd75, i am quite new myself. You will find people friendly and helpful on here and amusing, we need to laugh at times even if it hurts lol. I have an esa assessment on tuesday so i contacted Janet who is the expert on these matters. Who was so helpfull giving me loads of advice so fingers crossed. Ask questions as there is someone who will be able to answer. Best wishes Ann x
taffy1958
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to mark your acquaintance. Please take care of yourself.
All my hopes and dreams for you
Ken
Hi Ken, Thank you i hope you are as well as you can be. I have an esa assesment tomorrow 'tuesday' so feeling a bit jittery today. Janet has given me some great advice even though she was feeling poorly herself. So am ready i think.lol. best wishes Ann
I want to genuinely and sincerely wish you all the best of luck with your ESA assessment, fingers crossed for you!
Hi Ken, Thanks for the best wishes but they rang me at 4pm to cancel my esa asessment, no reason why just that i will get a letter from them. All that stress just to go through it again.
But it could be worse i wont let is get me down. We a sometimes stronger that we think. God bless
Ann
Hi again Ann
I am so genuinely sorry to read that and fingers crossed for you!
They sometimes so this, it's appalling
They sometimes do this, it's appalling.
I too Have Ibs also fibro and are finding life very difficult not being able to get to toilet in time even in the house. I am taking Imodium twice a day only to be able to go bowling, but the passing of wind is unbearable due to being so near to other people. Cannot control this. Any ideas. Have heard of charcoal pants that can be worn to stop the smell, has anyonelse heard of these. Any other info welcomed
Just for your own sake try and keep going. Good luck.
Hello and welcome to the gang. I hope you find the support your looking for, in fact I'm sure you can. 😊
Welcome to the group of the awesome people. Even though we have lots of pain we are here to help even though we cannot take your pain away but we are here to encourage you, listen, give advice or help lead you to websites that help. This has been and is the best support group I have found over 20 years of looking.
Welcome DerbyshireDragon75, I'm sorry to hear you've been diagnosed with fibromyalgia as well as coping with the other conditions you have.
There is a website 'benefits and work' it'll guide you through the application process of the different benefits available. They'll advise you how to answer the questions in such a way that you'll be able to fully explain how badly affected you are on your worst days. Sorry I haven't got the link, it's should come up first when you type into Google.
If I find the link I'll send it tto you. I hope you find this site useful. Everyone on here is helpful and generous with their knowledge and experiences.
Take care , Becky.
Benefits&Work are an excellent site. They charge a small subscription fee but gives you access to download their excellent manuals and ask questions in their forum. So it's well worth it. Some sites offer their manuals for free. This site might if you PM the admins. Just been awarded PIP at birth rates so am very pleased. I also have mental health problems so that helped with those issues
Hi, just thought I was the only one who suffers from PNES, it's good to find someone else who suffers from them! I also suffer from all the list you put on here. If you look up fibromyalgia you can read all about the symptoms. Good luck x
in reply to lilandles
Hi,
You're not alone, I have suffered with PNES since 2005 and my seizures are usually triggered by emotional stress and anxiety. I had been suffering with many of the Fibromyalgia symptoms since 2000, but it wasn't until I did some research and cross-referenced Chronic Fatigue Syndrome and Fibromyalgia and pushed for a Rheumatology appointment in 2013. I was eventually diagnosed with Fibromyalgia in December 2013.
I'm new also to the blog and have had Fibro for 17 years. I was in a very bad motorcycle accident and 23 surgeries. I have pain all the time and I had to change my whole life in order to cope with the pain and other symptoms that come along with this monster... I can't really plan anything because I don't know how I will feel the day of an event. It is a task getting dressed to go to the Dr. Driving kills me and I'm sure everyone else on here feels the same way. Like you have been hit by a truck. The best relief I get is to stretch as much as possible, rest when I need to and watch what I do. I have friends who use cannabis for their pain and it seems to help their stiffness and mobility too. I have COPD and am afraid to try it. But if you can it may help if you feel safe using it. I have tried everything and it helps about 2 weeks and stops working. Sleep is hard I have liver problems and can't take many medications also.
I do hope everyone can find help this is such a debilitation disease. Meditation helps also. Many Blessings!
Hi DD75,
I posted this a while ago for another member but thought you also might be able to gleen so info from it...!
So sorry to hear you have Fibromyalgia Syndrome FmS and a number of other illnesses, it is called a syndrome because it consists of a variety of symptoms, these can include or overlap various other disorders like, Chronic Fatigue Syndrome CFS or Myalgic Encephalomyelitis ME, which many who suffer with this have also, and is believed to be a chronic (long-term) disorder of the central nervous system.
FmS is not a terminal illness and leaves no permanent damage to the body but this does NOT mean that the pain and suffering experienced is any less.
Many Doctors are now beginning to take this condition more seriously but be sure you have a good GP that will work with you as you manage and take back as much of your life as you can. Also if not already, make sure you are seen by a Rheumatologist and have all the various tests and scans done also to rule out everything else.
These symptoms are what needs to be treated individually as there is yet no known cure for FmS and no national guidelines for treatment, and each person is individually unique so what works for one person may not necessarily work for another. The symptoms may include as I'm sure you are well aware, some or all of the following;
Widespread Pain: muscle, tendons, ligaments and joint pain that can be in any number of areas or all over your body, and even worse during a flare up. Co-codamol 30/500, thats 30mg of codine plus 500mg of paracetamol, can be quite effective on normal aches and pains for short periods of time an will take effect within approx 15 minutes, you can take up to 8, thats 2 x4 times in a 24 hour period. Always read the info leaflet with any medication as it can be very educational and there are some excellent books on FmS which can be obtained from the library or purchased on Ebay or the like, and as your knowledge of this illness increases it will be of great help for you to self manage your condition in the months and perhaps years ahead.
There is also meds like Tramadol for long term treatment of pain which can take a few days to a week to take effect and can be increased from 50mg up to a max of abt 200mg twice a day.
Then there is the Transdermal Patches like BuTrans 5mg up to abt 20mg released per hour over a 7 day duration for pain control which would begin to work effectively in about 6 hours or so, I don't know why but these are normally only given as a last resort even though they can be more effective than the tablets with less side effects, perhaps it's something to do with the cost of them for the NHS even though they are not the ones who are suffering.
For nerve pain there are medications such as Pregabalin Lyrica which start off abt 50 or 100mg up to abt 300mg twice a day, this will need a week or more to begin to take full effect.
And for inflammation pain relief there are a number of different types of anti-inflamitories such as Naproxen or Celecoxib again usually taken as tablets or capsules twice a day and need a week or more to take effect.
Fatigue: little or no energy, exhaustion and intense tiredness which can come on all of a sudden and may render you unable to do even the slightest of tasks, plenty of stress free rest is really the only effective measure which can be taken for this and find your safe limit of activity so as not to bring on a flare up, and try not to worry, what you don't get done today will keep to another day. I find it's good to just go with it an slow down, I mean really slow down in everything you do as your body is telling you too and take a nap whenever you feel the need.
Sleep Problems: such as not being able to sleep, insomnia, not staying asleep and not getting any deep or restorative sleep when you do sleep, an even waking up exhausted. Your Dr may prescribe some strong seditives for emergency or intermittent use only, as these can be very addictive although more than likely you would get a depression drug which also helps with sleep problems and anxiety such as Amiptriptline, Duloxetine or Mirtazapine to name but a few, they can take a number of weeks to reach maxium benefit and don't be affraid to increase the amount or change to a different type, with Dr's advice of course, if you feel they are not being helpful.
Headaches: various types, can seem like they are almost permanent, some can be caused by your fibromyalgia but others can be caused also by the amount an strength of other medications. If you are allowed some Co-codamol 15/500mg or again the stronger 50/500mg can help if not already taking them for normal pain, but if not permitted these the alternative is really just Paracetamol 500mg. I find getting into a good book or film or perhaps if able a walk or activity can take your mind of the head pai
Other symptoms include:
Morning stiffness, IBS irritable bowel syndrome, TMJ sore jaw joint, sore dry throat, sore burning or tingling hands and feet, depression, anxiety, stress, poor concentration, bad short term memory, weakness, nausea, confusion, low immune system, prone to catching colds, flu and infections, RLS restless leg syndrome, sore eyes, blurred vision, feeling bloated, cramped, rectum pain, flatulence and tummy rumbling, urination problems, and heightened sensitivity to noise, light, heat, cold, weather smells, etc etc etc.
Not forgetting any side effects from your prescribed medication and last but by no means least, coming into contact with people who don't want to understand and think we are just lazy and saying it's all in our heads...!!
Some of the other things to help aside from medication, have already been stated by other members of this forum in your replies, like CBT Cognitive Behaviour Therapy, attending the Pain Clinic, courses run by different illness an Arthritis Volunteer groups, your GP should be able to tell you of suitable upcoming courses in your area, plus lite exercise like stretching, walking, swimming and perhaps cycling if possible to release your bodies natural pain killer, remembering your safe limit not to overdo it, also the importance of maintaining a good balanced diet.
It took also about 3 years for me to get my diagnosis and I had never been on any medication or tablets for any length of time in my entire life. Also for about the first year I didn't even know the disorder existed never mind how to deal with it and at that time I don't think my GP of then, knew much about it either lol. It also took quite a while for me to find my safe limit as the odd day when I wasn't too bad I would do all sorts of things that I had missed doing out an about or in an around the house then ended up in bed suffering for it for about 3 days.
Edited By Admin
You also may be now entitledto various benefits like ESA, DLA, PIP, etc, be sure to check this out to find out what you are entitled to and always, no matter what, get help from a group like the Citizens Advice Bureau or an Arthritis Care group to fill in your claim or appeal forms as they are dedicated to helping people with illnesses and they also know what the benefits criteria is and how best to word the answers as you describe your illness.
Not forgetting if you can a nice relaxing HOLIDAY in the sun for a few weeks
Perhaps others who read this may have more symptoms that I have not mentioned that they wish to list, please let us know...?
I hope this may be of some help to you chum and God bless you in your battle with this discreet unpredictable illness...
Hugh
Hi I'm a new member and Fibro sufferer for 18years! don't know if anyone can help me? I was on DLA higher rate mobility but was switched to PIP. I had a home visit and they have just got back to me saying 1) I was observed touching my head which I can't do and they said because of this I can wash my hair!
They didn't mention that I have to be carried into the bath and have somebody wash me and carry me out of the bath too! Not to mention I can't grip to get soap, shampoo etc.
I was also asked if I could go somewhere I didn't know which I can't (I don't go out alone at all!) and said I can't and when asked what do you do if you have to go somewhere I'd never been and I told them my husband would have to take me. When pressed AGAIN he asked how we would find our way I said we have a Sat Nav. This has been twisted to I can get around to places I don't know because I have a satnav!!
I wish I'd recorded the visit now as everything has been falsely recorded!! My days I usually stay in bed as my pain is too bad and of course now I'm flared up but have to appeal this decision. Has anyone else had this happen? My husband was home with me during the home visit and is as shocked by what's been reported as I am! It's bad enough being disabled but now I'm having my car taken from me and I can't walk my little boy down the Rd to get the school bus as I can't walk that far so now I'm stuck home with my son and feel absolutely trapped and annoyed that the report is full of lies!!
Sorry to go on but it's disgusting that this can happen 😔
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