Hi I'm new on here , my name is Bev. I have been diagnosed with fibromyalgia, Thyroiditis, Tendinitis and have Ischesmic heart disease. I've had 3 heart attacks one of them was a MI. I also suffer from anxiety attacks depression and now I may have Autoimmune disease.
I am in tremendous pain in my shoulders mainly but sometimes the pain travels to my hips and legs. I am on Pregabalin just started this its aiw disease 50mg 3 times a day but the pain doesn't seem to go. Somedays I csnt even get out of bed its so bad. I just want any tips on how to manage this pain and would I be entitled for pip?
Please I need some help
Thanks ❤️
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Suffering21
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Hello Suffering. You poor thing - you have a lot of health issues to cope with. But stay calm - you have come to the right place for sympathetic advice.
Fibromyalgia is a club nobody wanted to join - but there is a lot you can do to help yourself. As I understand it - medication takes a while to kick in and if one doesn’t help, there are other options. Personally I don’t tolerate any of them - so have had to find other ways to cope.
I find eating a really natural diet with no additives or E numbers is good. No alcohol or coffee, minimum sugar or fungal foods eg mushrooms or blue cheese. Stretching - sounds trivial - but really helps. Pacing - again sounds trivial - but is invaluable.
Some sufferers in here are experts on medication. Others are really knowledgeable about applying for benefits.
But we are all very sympathetic to how bad fibromyalgia can make you feel. You are not on your own. Keep reading and learn as much as you can about how to cope with this really nasty condition.
Thank you for a your help and good advice. I do eat very healthy no sugar mostly gluten free. Joining this site has made me feel like im not alone and so grateful for all the help and advice I can get on here .
If we were towns we would be twined. Sorry to hear your in a similar boat as me. I take just enough Gabapentin and Co-Codamol to take the edge off things, get me moving and keep some sort of brain function going (2x300mg Gabapentin + 2x 30/500mg Co-codamol (30mg Codeine/500mg Paracetamol) per day).Besides that, like others I watch what I eat, avoiding high sugar, high gluten foods, no booze (saintly chimes), and basically avoid large amounts of anything unless I want it to come out with rocket boosters.
I take just enough exercise to keep mobile and bendy. Any more and I get seriously over heated and we are also inexplosive territory again.
I learnt meditation techniques and these help, add in headphones and burying my head in music, that is how I cope.
Got rid of the kids and replaced them with a couple of moggies that helps too.
Thank you so much for the advise much appreciated. I'm trying a lot of things at the mo and have found massaging the areas with a hardish ball against the wall and ice compression does help. I do feel a bit sick sometimes wonder what that can be? I have been ill for a while due to my heart and Thyroiditis being tired all the time is an under statement . I do my best not to sit around and feel sorry for myself but the tiredness gets the better of me.
At the mo om off work and finding it hard financially I dont think I will be entitled to any pip hate asking its the face to face assessment which I dont think I can handle nor the forms.
There are people on here that can advise you about how to fill in the forms and the face to face meeting. I think the meeting are done over the phone now. Don't worry about not being able to deal with people it is one of the creteria they have to take into account. If you get turned down you can appeal the decision if you disagree with their assessment. The company involved are private companies employed by the government to save money, they get a bonus for every claiment they turn down so the are not on your side. Expect to have to fight them, get help from people round you, citizens advice, your doctor and the chicken from next doors garden if needs be. Don't give up that is what they want, despite the fact they have lost millions by having appeals for bad decisions.
Thanks so much for all the advice. I am seeing my doc on Friday and will tell him everything and hopefully I will get meds that will help the pain . I will call and ask for the pip forms.
Hi Bev, if you are still of working age, then yes, you could get PIP. I believe the cut off age is going to be raised to 66 soon, to align with pension age.
I am over 70 and I have a PIP. If you have been diagnosed with fibro, then you are considered to be disabled and can apply for the PIP. If you are old enough, contact AgeUK and ask them for help. I did that and all the form filling was left to the people sent to my house to help me with the form (that is, do it). As usual, my first application failed, but with the help of a letter from my G and the wonderful person sent by AgeUK to help me, my second application was successful for the full amount. Good luck.
I'm 73, I have DLA still. I heard on the news the other day that the cut off date for first application for PIP will be raised to 66. Once you have it you keep it. If I misled anyone, I aplologise.
Well Midori I'm pleased to know I may stand a change for pip. I've worked almost a my life till I had a massive heart attack but still carried on working and then suffered yet another 2 heart attacks and since then, my health has gone downhill with Thyroiditis, Tendinitis, Angina, Anxiety and depression now fibro. Hope I don't sound like a hypochondriac? But I'm a tuff old boot. Thanks for all the advise
Hi I'm so grateful for your valid advice and wish you well. Its so nice to get help and advice from so many in the same boat as me . Such you people on here !
Hi All, Fibrokim here. Can anyone tell me what the higher PIP payment is please. I don't want to get my hopes up if it is not enough to pay all my bills. Many thanks.
Hey there just found this group I'm 42 and been diagnosed with fibromyalgia last year but have suffered for around 10 years I am finding it very difficult keeping control of the pain I'm currently taking gabapentin 900 x3 a day plus zapain 30/500 2 x4 daily and I'm still not comfortable I'm now on crutches and use wheelchair when out as my balance is very poor and my legs feel like lead weights and pain gets worse and then I can't move the next day also having more tests as they think I may have lupus on top I suffer with mental health and been having lots of panic attacks lately and headaches I'm a stay at home mum now as I cant work as can bearly mobilise so this has lost my career as a senior carer and was hoping one day to run my own home but that is not possable I feel so guilty that I need constant help and have to rely on my family and children to suport me during the day and at night it's just sole distorying I'm glad I have found this group will be nice to talk to people that know what I'm going threw do you feel that no one listens to you and your making things up .
Sounds like your having a really rough time hunI tried pregabalin and all it did for me was make me drowsy and zombie-like so the pain was easier to sleep through.
I found Venlafaxine very beneficial, less pain, better sleep, and it treats anxiety and depression.
The first month was rough with mood swings but that's the case with most anti-depressants etc.
I went from the full dose of pregabalin, full dose of amitriptyline, full dose of fluoxetine, full dose tramadol and still only functioning 50% of the time to just needing 15mg co-codamol 4 times a day most days and going back to university
As you also have heart issues I would recommend a referral for a supervised exercise programme as you need to approach it very carefully, strength training has helped with fibromyalgia management.
If your weight is creeping up with inactivity ask to see a dietician too.
If your GP is not forthcoming with help insist on seeing someone else.
Thanks so much huni, my doctor is lovely I've been with him for over 30 years. He knows all what I've been through and is very careful with prescribing my meds.I am in so much pain i try and do things but I suffer after though.
I guess it will get better in time.
You take care and thanks again for all your help x
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