Advice needed from other fibro buddies out there

Hi, I haven't posted in a while,mostly due to the fact I've been so run down and controlled by my constant migraines & Fibromyalgia, on top of the flare ups that seem to have been non stop I'm now dealing with PIP reclaim procedure that's got to the point of 7months no payments and barley any contact,only to be set up for an home visit to which I was unconscious during- which was no shock considering the down hill battle I've faced health wise since this procedure restarted, due to the fact I was unconscious I received letter stating didn't take part or have a good enough reason for this.... baring in mind we repeatedly asked for my reclaiming be done by a paper based assessment because of the severity of my illness and the fact a judge and tribunal awarded me full pip off my medical information 2 and a half years ago.

Back to the reason for my post;

A little over 3 weeks ago my mother had what seemed like a TIA that affected her right side,which was then lowered to a suspected migraine numbness and spasms and possible seizures,she didn't receive any scans or tests although she saw 5doctors and was sent home , 6 days later she had the worst attack yet that was clear to see was a seizure,after being rushed hospital and begging for scans to be done to find out what was going on she ended up having 2 more and was kept in so that she was able to receive CT first thing,which led us to the news she has a suspected brain tumour,which led to last Wednesday she underwent surgery to do a biopsy which we're waiting for the results on....(I know a lot to take in but I need to explain so that I can get as much advice as possible)

My reasons for writing this is I need advice on the best way to control my fibromyalgia during such a stressful time,how to avoid flare ups when I'm in the centre of a huge amount of triggers I usually stay away from and the best diet plan to help keep from making myself more prone to the inevitable....I know deep down I'm probably going to reach a point when I have the flare up of all flare ups which is terrifying but I need to hold it off for as long as possible

Thank you,and I'm sorry it's so much to read.

8 Replies

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  • Good Morning MigraineGirl

    I am so sorry to hear about your mum; that sounds really awful and if there is anything we can do please let us know!

    I'm not sure what you use to try and 'combat' your Fibro but there are maybe some suggestions that can help you as no doubt you are out and about visiting your mum at the moment! Have you ever used a TENs machine? They are really brilliant and I use mine at work when I am at my desk and it's surprising how many hours it can help you survive! Also, have you used magnesium spray as this is something that you can use at any time? Also Epsom salts are good if you can use them in a bath? I think some of the reasons is that you just cannot stop a flare if it's going to happen; but perhaps trying not to worry about it (I know easier send than done) will help to prolong the flare from happening?

    Hope you're okay xxx

  • God bless you and your mum, I am sorry you are going through such a dreadful time. You are bound to be anxious and stressed so I understand you are worried about major fibro flares. Firstly have you got someone to help and support you through this and share the responsibility so you can take turns being with your mum? If not then have you at least someone you can talk to when you need to unload your thoughts and fears? (You have us my love, someone will always be here to listen). Also I know from experience in this type of situation, your eating habits can go massively awry. You end up eating at strange times plus it is so easy to just grab junk food and/or drink lots of caffeine to give you a boost, which will only end up making you feel worse. At stressful times it is best to try and eat little and often as this will keep your metabolism ticking over all day and you will minimise peaks and troughs in energy levels. Make an effort to eat breakfast, even though you may not feel hungry or believe you have the time, breakfast helps to kick start your metabolism for the day and also helps to stabilise your blood sugar level which will in turn reduce stress. Choose fruit or fruit juice and a whole-grain cereal for maximum benefits. Rather than snack on crisps or sweets, make sure you have some fruit and nuts to nibble on instead throughout the day. Bananas and berries are good energy giving fruits, and hazel and brazil nuts are especially good as they not only give you energy but contain magnesium which helps to relax muscles and reduce anxiety. Have a water bottle on you to ensure you stay hydrated and try and avoid fizzy drinks and coffee (though the odd cuppa won’t hurt). I know you won’t feel like cooking much but meals like pasta, jacket spud and omelettes are quick to make and will give you the energy you need.

    I know this is easier said than done but you must make time for yourself and have a quiet place where you can calm your mind and body and recuperate from the stress. If you are able, as DG suggests, have a soak in the bath (with Epsom salts if suitable) before you go to bed each night. I know it’s stating the obvious but rest is very important so that your body can rejuvenate and have the strength to cope at such a worrying time. I know you are already anticipating flares which in itself will cause you anxiety so as DG says, try not to dwell too much on these thoughts.

    Your routine will no doubt be disrupted so set any reminders you need on your phone regarding taking meds and any other things you need to remember throughout the day. I also have a paper backup and have a little notepad that I jot stuff down on.

    I spent so much time in hospitals with my own mum and I know how tortuously slow time passes so I would suggest you always have a book/kindle and something you can listen to music on. For those periods when you’re sitting around just waiting, it helps to have something to distract and help calm you rather than having your mind run wild with its thoughts.

    In the end it is a case of not neglecting yourself so that you are strong and capable enough to help your mum through this ordeal. And we are here to help you hun so you remember you are not alone and you WILL get through this. I am praying that your mum’s results turn out okay and that she can get the treatment she needs. Take care my lovely, sending you and your mum lots of love, hugs and positive, healing vibes. xxx

  • Remember that you can only do what YOU can do. You might want to try some relaxation techniques such as deep breathing etc three times a day. Slow down if it's getting to you in terms of pain and let others in your family help. Be kind to yourself, eat lots of good nutritious meals with oily fish (if you like it)

    Please don't take this the wrong way.........If your mum has a brain tumour(malignant or benign) there is an organisation called the brains trust who are very good at offering support to people with brain tumours. I went to a wee talk with them at work yesterday and they are so nice. They have a website, they'd love to hear from you both if you feel it's appropriate for your mum (I'm not trying to scare you)..

    brainstrust.org.uk

    If you're getting the right amount of help and support through this difficult time, then it may have a good effect upon your health.

    If you feel your anxiety is overwhelming, do see your gp, they can help you.

    Similarly don't let your fibro flare to the point that you're in agony, go and see your doctor and explain the difficult situation your finding yourself in.

  • Hi Migraine Girl.... I'm sorry that you are having a really hard time. It is hard enough to have to deal with either fibro, OR the migraines, but both sucks. Then throw the family complexities on top and you have a lot to deal with.

    One of the things I have found helpful may sound silly to some, but it has worked for me for years with stressful situations. I chant slowly while I breathe to match it. It doesn't matter what you chant.. If you are trying to sleep, try chanting "deep, deep, peaceful sleep." Or if you are at the hospital with your Mum waiting, a simple word like "peace" or "calm" said while you breathe in and out slowly will remove your mind from the situation so you don't get eaten by it.

    Another seemingly silly thing is to go get a green snack - the darker the better.. Kale chips, a salad, a veggie plate will all help alkalinize your system, and for me at least, I have found that the less acidic my body is, the less the Fibro will affect me.

    Here's keeping you in our thoughts and prayers (if that is okay with you) as you work through this hard time.

  • Hi Migraine girl,

    My thoughts are with you and your Mum at a difficult time. I agree with the other replies. You are you. No people are the same, thank goodness so our Fibro and the way we can manage our Fibro. With your situation I would suggest you go to your G.P. and have a chat about how things are. They can signpost or refer you to other sources to assist you with many issues.

    Lots of gentle hugs

  • Thank you all for such honest and loving responses xo

    we had the results on tuesday, they turned out to be the worst they could have been, Stage 4 Glioblastoma that's in an area of her brain that can never be operated on due to the life changing and devastating results removing it would cause, are only hope now is that radiation and chemo meds can shrink it and keep it treated so that we have her for as long as possible.

    thank you all for the replys, prayers and support it means more than you could know, im trying my best to stay calm and rest as much as possible although my brain is stuck in panic mode, the guilt of not being able to be there constantly and causing her stress worrying about me is a tough one but im trying to rest and take care of myself as much as possible, im planning on seeing my gp as soon as possible and see what he can suggest,

    sorry for the late reply the last week has been a blur, thank you all once again. xoxo

  • Oh my love I am so sorry, I can only imagine how devastating it was to get those results. I know from what I went through with my mum you will go through a whole gamut of feelings and emotions but please, please try not to feel guilty. You are doing the best you can and no one person can do everything. I think seeing your GP is a good idea as you need to look after yourself first and foremost. I will be praying for you and your mum but if you ever need to vent privately feel free to pm me. Take care lovely, sending you and your family love, hugs and positive healing vibes. xxx

  • You are a strong and capable person. The situation is not great with your Mum but you are supporting her as much as you can be I feel. We have to live each day and thank goodness its only 24hrs long!

    Live , laugh & love!

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