Hi everyone, was 'officially' diagnosed with Fibromyalgia half way through lockdown. It couldn't have come at a worse time as I was just coming out of a severe bout of PTSD following my wife's cancer battle. At the same time I was also diagnosed with Chronic Fatigue Syndrome, the impact of this plus my ongoing battle with Psoriatic Arthritis really hit me hard. I thought things could not get possibly worse!!! In the end my diagnosis was hand led by myself to my GP who ,I got the impression was unsure about the whole thing. My GP eventually tried to get me a referral to a specialist clinic in Leeds but alas they refused to take me because I had been suffering from PTSD! In the end and devoid of any ideas of what to do next, I mentioned to my GP that my PTSD councillor could possibly help, 'What a good idea' she said. Thankfully my councillor has had experience of dealing with Chronic Fatigue/Fibromyalgia so Im currently having to pay a fee each time I see him. It is helping but the thing I have big problems with are the bad days and the feeling of embarrassment/uselessness that I can do absolutely nowt! I hate it with a vengeance and when I see bike riders/runners go pass I get so angry and frustrated with my self because that should be me!!! I am gradually learning to accept that I have this illness but that is also hard to as I am not getting better as fast as I want to!! From my PTSD days I am still taking amitriptyline which has helped me to sleep, and for pain I have tramadol which was issued to aid my arthritic pain, but this also helps my aches and pains in my back and legs. I suppose Im looking for any little titbits that some of you may have about acceptance and managing the damned bad days!!
Keep Safe !!!
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rifleman
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Thankfully my wife survived, recovered and is now cancer free. Some days the pain in my back and lower legs is intolerable ,other days I can hardly notice it......it never warns me what type of day I will have ,I have to wake up I then know what my day will be like😣
It's called a flare up for each person it's different I remember it all started in 2017 for me but me and daughter diagnosed it 6 months later!! And doc diagnosed me in 2018
And to be honest each person experience it differently my life had been hell I'm saying If you fab handle then try to manage it pain with light exercise yoga reading what ever makes you happy 😊 try it but I dnt know about how you are within urself and how you feel but for me I've been through hell
One sentence stands out for me in your post - that you're not getting better as fast as you want to. Unfortunately, as anyone here will tell you, there is no cure for fibromyalgia, or for Chronic Fatigue either. The best we can do is learn to accept and live with the conditions. I have suffered from both for almost 40 years now.
Pacing is very important, and not trying to force your body to do too much.
Speak to your counsellor about your feelings and see what they say.
Hello there. I too have fibro /cfs, I totally get your frustration when you see people out cycling , jogging etc, I use to swim 3 times a week but however little I dropped down too lengths wise I felt worse off and fatigue bad, so yes very hard to keep up and regular excercise. A lot of us have added conditions arthritis being a very common one but so painful, I use bio freeze gel for my calf muscles , back neck shoulders, (check with pharmacist it’s okay to use with any other meds) I do use Himalayan salts and Epsom salts in my bath , that help relax my muscles. Pacing as much as we can , lots of mini breaks always helps me through my day, I used to garden for a whole day now I’m lucky if I get to do a half hour much to my annoyance and I will admit I do get frustrated which I know doesn’t help . Some days you can look back on with a smile and others will be tough. Sometimes I check in here to chat , it also reminds me how many thousands are living with Fibro 🙁, but I find it helps .
Bless you......it’s my first time on something like this so I’m still finding my way around. The point you make about checking in here every now and again makes loads of sense, already I’m feeling in my head the benefit. I must admit though I was slightly sceptical at first, it was my councillor who suggested I try and find a chat room or whatever they call it . Definitely a good suggestion😄
Gosh I am sorry to hear that you and your family have been through the mill recently, I totally understand the frustration in 'this being the last thing you need', but from what I have read you are a strong person, resilient; and I am positive you will learn to ride this wave.
Firstly know you are not alone, and I am sure you will receive great advice from the wonderful members here; just having the support of others who can empathise has made a huge difference for me.
Unfortunately there are no quick fixes to Fibromyalgia(as far as I am aware), and as Rabs550 said, it affects everyone so differently. I don't have anything in particular that I do during a flare up, apart from listening to my body, using heat(because that works for me, might be cold for yourself) I heat dampened towels in the microwave to wrap or drape where required, hot-water bottles and heat pads are my best friends. Colouring in or painting by numbers are my favourite activities, extremely relaxing. If it is cold your body requires you could put dampened towels in the freezer for 10-15 mins(Always remember to wrap your hot or cold towel in tea towel before use so as not to damage skin, not required if placing on top of clothing).
I don't really understand why the 'specialist clinic' refused to see you and although i am happy that your PTSD councillor has been of help, I do feel your GP should be advising you better. I would suggest asking your GP for a referral to a Rheumatologist, this is who diagnosed me while ruling out arthritis and diabetes. If you do see a Rheumatologist they may be able to put you forward for a "Pain Management Programme" (perhaps your GP can assist with PMP). I know that Fibro. is aggravated by stress, the only reason I can think why the 'specialist clinic' refused to see you.
Thankfully i completed a Pain Management Programme in Feb. This was a 12 week course, attending once a week, for a 3.5 hour session. I was extremely sceptical in the beginning as It was Mindfulness based, but on the very first session, they made so much sense; i decided that I had to continue(after many ears of trying medications, then more than 11 years on Tramadol & Amitriptyline prescribed for Hyper Mobility Syndrome), I was at the end of my tether with pharmaceuticals and to be honest ready to give anything a try.
On the PMP I learned how one's brain reacts to pain, and how detrimental our brain can be; the importance of acceptance, because once you accept, you can learn how to live with what ever faces you; positivity and as stress free living is certainly top of the list for getting to or staying at 'Base Level'. I was to focus on my values, prioritise importance, and taught to set smart goals. I learned how to be mindful and that Mindfulness and Guided Meditation are awesome tools to have at your disposal. I learned to Pace activities, which i think has been the most helpful as well as the fact that light exercise daily and a healthy well balanced diet are extremely important, as well as doing something enjoyable(even if this means the enjoyable activity is the only thing you do in a day).
I know this is a lot to take in, it is not easy and please know, I am very much a work in progress; flare ups and life does get in the way, but as long as you are willing to get back on track when symptoms ease, I am hopeful that life will be absolutely wonderful once again.
It is extremely frustrating not being able to do what you once did so easily, and that's not to say that you will never be able to do that thing again, you may need to find a different way of doing things, please try not to be too hard on yourself(this will exacerbate symptoms); It's perhaps an opportunity to do/learn something you have always wanted to try.
Anyhoo, I am sure your eyeballs have had enough of my ramblings, sorry!
I hope your symptoms ease, and that you receive the support you require. Remember and be kind to yourself.
Bless you and thank you for taking time to write such a detailed response,you are a star. I am already under a Rheumy doctor,I just haven’t seen them for over a because of Covid.☹️Thankfully I have a re- scheduled appointment this coming November so I will be able to update them. I will also suggest a PMP . When you are desperate you will do anything which is what I’m trying to do,find what fits me best. Your last sentence has hit a nail in that I know I have work to do on that . On bad days I get frustrated,angry,embarrassed about me being unable to do anything ,couple that with a sense of uselessness You can see why my bad days are really bad and in your words I am not kind to myself and I need to be😤
Nothing more I could add to what Fibroska mentioned, covered it very well. Do try and get on a pain management programme, I believe everyone will come away thinking it worthwhile. This group can give advice and support to you when you need it. Good luck x
There seems to be a link between psoriatic arthritis and low levels of vitamin D (which I would expect as Dr Coimbra has been successfully treating psoriasis with high doses of vitamin D for 20 years.). I’m not sure if the above link will work but there are several studies available if you search on ‘psoriatic arthritis and vitamin D’. As a therapist I would guess that there is a strong link between the physical and any mental trauma. (Descartes was wrong; the brain and body are not separate.). Having unresolved mental trauma impacts on healing of the physical. Dealing with the former can release the latter and dealing with the latter can release the former.
Hi rifleman, always remember you are not alone. I'm recently new to this site and so have have experienced nothing but compassion and new ideas. I got diagnosed in 2018 and also felt the frustration of "i wish I could do this,that and other", but I can't, I want to and sometimes push myself to do things, to then suffer the consequences after. Pain management class did help to set reasonable targets, eg instead of cutting all the grass, cut 1/3 over three days. It's an accomplishment, even though it takes longer. Everyone will give you some advise and its different for everyone. Try and stay positive and focus on the little things in life. X
Hi Dragonfly43. I am gradually beginning to realise just how effective and helpful sharing My concerns and issues with everyone and to know that I’m not alone. On bad days you do feel rather lonely and withdrawn and sorry for your self, BUT this community in only 1 day has definitely boosted my self confidence and is gradually changing my view on how to deal with this damn illness in a positive way👍
Hi it’s really helpful when you find a group like this. At anytime you ask questions and advice u find it really good. Acceptance is a big thing I found it hard and still do to accept the change in my life, but I have to try and look forward and be positive. My family are my best motivation I’ve just had my first grandson I worry about dropping him etc. I’ve cried a lot about this thinking the worse but now he’s here 12 wks old.
It’s ok I manage on bad days I rest and don’t do much. This is a strange Illness but under neath we are the same people we have to remember that. Just take one day at a time that’s all we can do. Take care
Annmarie09 again I say bless and thank you. Important the line you mention family and the input they can have to help. Of course I’m still trying to get them to learn and understand this damn illness first. We are getting there slowly but surely. My wife god bless her hasn’t long got over and recovered from cancer, but being a devoted Christian she helps me day by day and when I need it brings me back to Earth with that long lost word of the English language that for some reason we do not use enough........NO😉
I did a 'a living with pain course' at my local buddhist centre which was based on Buddhism (ie mindfulness) but was entirely secular other than that. I thought it was completely pointless and achieved nothing at the time it wasn't til well over a year later I realized it had done me good and had changed my relationship with pain. So even if it doesn't help at first it may well be worth doing as it may help in the long run.
I know a lot, or rather most, people on here will say pace yourself and listen to your body but personally I try to ignore my body as much as possible. Fitness is very important to me and I'm prepared to go through a lot of pain for even a modicum of it. The fatigue is harder I think to deal with. I also have two kids under 5, chronic migraines and a lot of other physical/mental illnesses. One thing with fibro is its very variable person to person and day to day so youve gotta just get through the bad days bc there will be some good days too.
Cat00,I tried pushing through fitness barrier but that just didn’t work,I would have a serious relapse following my physical jerks and I couldn’t just stand it. I am gradually learning what is best and what is not,also developing ways to deal with the bouts of tiredness.
Hi rifleman and welcome to the club no one wants to be in but unfortunately here we are 🙈 like a few b4 me said the main thing is listen to your body and try pace urself its hard to do at times but better for you in long run. When i got my diagnosisis i struggled to accept it like you i was peed off when i seen someone running or cycling. It took me a while to come to terms with it but i done my grieving for my old life and now i am trying to make the best of my new 1. Dont get me wrong i sometimes still get angry and peed off at times but then think hey ho put ur big girl pants on n get on with it there are worse off than me. I find this group helps i dont write as often as i should but i do read the posts daily as they are very helpful and some cheer me up when not at best. Hope you find what suits you and helps you best soon take care and stay safe gentle hugs xx D
You have made me smile a little bit so thank you! Encouragement of this sort has worked wonders on me over that last couple of days and as you rightly allude to this group is a genuine lifesaver.
Fibro varies very much from person to person and ebbs and flows, with differing triggers. You already know that pushing through it doesn't work for you so take it gently and try to give yourself some time to adjust. I am so glad that your wife has made a good recovery and is with you, supporting you, but you have both been through huge stress in all senses and that takes an enormous toll on the body, plus depleting it's nutrients. I am sure you are both being kind, gentle and supportive of each other, but you both need to give yourselves the same treatment - be nice to yourselves, speak softly to yourself in your head as if you were helping a child and try not to feel the anger with yourself. This is not your fault, it is how it is at the moment but it is not going to stay this bad, you can and will improve.
Personally I didn't find the Pain Management helpful (although mine was 15+ years ago so it may have improved), but I have found techniques that suit me that do help - EFT/tapping, deep breathing, meditation, getting outside into nature (preferably with bare feet in the grass/mud/water/sand), gentle stretching and a bit of easy yoga, exercises for the vagus nerve (enthusiastic gargling and singing!). I also got considerable benefit from using an autoimmune diet, although I appreciate not everyone does. As you have psoriatic arthritis you may already be on one, or have tried it in the past.
Checking and getting your vitamin and mineral levels optimal would be a very good idea. I found Vitamin D and magnesium especially useful. I use a magnesium oil spray on skin - then you can put it on sore joints or muscles. I don't spray it on my face, but a little dabbed onto temples is great for headaches. Very calming and helps me sleep (best used in the evenings). Best not to supplement B12/folate until after proper testing.
A couple of suggestions if I could, are
(1) have a look at Dr Anne Louise Oaklander on YouTube. She has done a lecture called Small Fiber, Big Pain (Radcliffe) about Small Fibre (Poly)Neuropathy, which is now believed to be behind about 50% of Fibro diagnoses. I think you may find it helpful.
(There are also genetic links, with a variant (or SNP) on COMT associated with fibro. This affects the way you process neurotransmitters like dopamine and adrenaline/noradrenaline, and I suspect that, like me, this may be a part of your overall picture.)
and
(2) A book called Recovery from Chronic Illness with mind-body medicine, by Michaela (Micki) Rose. Sounds a bit woo-woo but I assure you it is not, or only in the best way! Micki is a functional practitioner with an extremely useful website
( purehealthclinic.co.uk/) and has had a lot of health issues herself so knows what it is like. I have this book and her Gluten Plan and she has been hugely helpful in my progress to date.
To quote Micki - 'Your body knows how to heal: all you have to do is give it the chance'.
What can I say...but thank you, thank you!! I have just started trying EFT tapping as someone put me in touch with the Optimum Health Clinic. Not sure what to think about EFT at the mo. I probably need to be a little more patient(which is not me)with it and give it time. Your vitamin suggestion is one that I'm currently looking at my. I already have a B12 deficiency so that is being sorted by injections every 3 months.
EFT is a funny one. I do get benefit but actually just find the action of the tapping calms me. I find a piece of music that I like a lot and has a rhythm that 'fits', (preferably on YouTube with some images that I can relax to) and just tap along. Then whenever I hear that music on the radio it makes me smile, I see the images and I tap. I mainly use Golden Brown by The Stranglers, as I've always loved the time signature, but Phil Collins In The Air Tonight also works well. Just work through your favourite tracks and see what feels good. Music has always changed my mood, so I use it a lot.
Hopefully you had loading doses for your B12 before dropping to 3 monthly. Have you been on the injections for long and how low were you? Might need to be more frequent, given how your symptoms sound. All these things interlink. I have the COMT variant that I mentioned and this affects MTHFR and others, so I get on better with methylcobalamin and also needed methytetrahydrofolate. Mine wasn't that low, but wasn't getting into the cells. (You may not need the methyl forms, but it is something else to be aware of.)
Excellent, grew up with classical so listen to a lot of that too. Just do whatever you need to bring you some calm and slow everything right down. Best wishes
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