I was diagnosed with Fibromyalgia by a Rheumatologist in May and at that time, although I was in pain daily and suffering frequent headaches, I was able to maintain my full time job and do most of my chores at home with a little difficulty.
Since May, I seem to have deteriorated majorly. My ‘cluster’ headaches are to a point I can wake up 6 days out of 7 ‘thick headed’ and by the time I’ve struggled dressing and getting downstairs to take my pain killers, Ive had to weigh up whether or not I believe it’s becoming a migraine to then know whether to take my migraine meds specifically on top of analgesics (can only have a certain amount of these migraine meds prescribed per month).
The pain killers I’m currently on add to my already chronic levels of fatigue. And if I do take a migraine tablet, I can guarantee the rest of the day is a wipe out (even more so than it already is). Unfortunately I was unable to tolerate Duloxetine and felt amitriptyline was unhelpful.
I’ve developed pain in my toes, feet, knees and hips (especially left sided) I have lower back degenerative disc disease, endometriosis and now upper spinal pain and arm pain and limited range of movement. My fingers even hurt now. I barely feel rested anymore, even after what I consider a better nights sleep.
I feel incredibly low. I’ve literally gone from being a nursing sister managing a caseload and a team 1 year ago to not even being able to work from home, and currently off long term sick. I now have the additional stress of waiting for benefits to be sorted and work capability assessments from DWP and Occupational Health.
The GP have recently referred me to CBT, Physio and a Pain Coach - all of whom are giving me the same info, acceptance, pacing, small amounts of exercise and patience, find new things to enjoy that don’t make me feel worse in terms of doing too much at once.
And yet I still struggle to do this and end up in what I would consider either a) a never ending flare up or b) my new normal.
I guess what I need to figure out is, which one is it? I can’t even do bare minimal without feeling zapped. How then could I be expected to work a part time job even (let alone full time which is technically what I need to do to keep up with bills etc). I’m already worrying about how I’m perceived by such as assessors who need to make my disability decisions. I just feel I’m between a rock and a hard place - stuck in this viscous cycle that I can’t work out nor get off. And it’s soul destroying when people make comments such as ‘at your age’, as if you can’t have these hidden disabilities because you’re not considered elderly enough.
Anyway - just needed a rant and to get some perspective I guess. Thank you x
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LauLau212
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Hello Laulau, I'm so incredibly sorry this is happening to you. I can relate to so much of what you said. I've also been forced to give up work (community carer and cleaner). Ironically I hear time and again, those who care for others seem to be destined for our future! How's that fair! I was also unable to tolerate duloxetine and didn't find amitriptyline or Nortriptyline help long term. A prescription of acceptance and pacing is also hard to tolerate but that's my life now too ☹️. The only words of wisdom I have is try anything and everything that you can stomach and afford to find those little somethings that makes life a little more tolerable. Unfortunately they seem different for everyone 😏. Keep ranting - that's very medicinal! You're in a safe space here of love and understanding x
Hi. I totally get what you say, especially about the migraines. I’m on Sumatriptan and often wake with a headache that I have to decide how bad because I don’t like the med side effects and cant take too many, otherwise doc has said beta blockers! No thanks.
I now work every other day spaced apart to keep working as a Teaching Assistant but pay is rubbish however it gives me such a lot of satisfaction to be part of the workforce. If you can be part of “something” that gives you that buzz, maybe that will improve your mental health and lead to pain improvement. That’s the hope.
It sounds as though in your career and your life you're a real problem solver. You're used to working out what needs to be done and then getting on with fixing it. And now that's just not working. It sounds hugely frustrating, especially when other people don't even acknowledge how hard you're working.
If you try and take all the issues at once it's going to be overwhelming. Then the vicious cycle of stress and symptoms kicks in. I 'm no expert, but some things that have helped me.
Keep a journal - there are some online apps - but a notebook works just as well. Note your pain, your activity, your food. Don't analyse it every day, but have a look back over a couple of weeks and see if there are any patterns. Try things for a few days, and don't expect a result on day 1. Sometimes it gets worse before it gets better.
For the work / benefits / finance part, try and take one thing at a time. What are you in control of doing and what is outside your control? Take some advice from a knowledgeable source. Could be your union, Citizens Advice, the FMA benefits helpline.
Acknowledge your worry, and try not to dwell on it. I say out loud to my inner voice, 'thank you for telling me that. I'm dealing with it.' Sounds really stupid but over time the worry does get less.
And for everyone else who has an opinion have a strategy. I have friends who don't think fibro exists. I just don't talk about it with them. For those with advice, I thank them and say I'll think about their suggestions. And I have some brilliant friends who I can talk to.
So, no amazing revelations from me - but something might help a bit. Hang in there. Good luck.
hi, I don’t normally comment on here but I feel pretty similar to yourself and know it feels really isolating and overwhelming.
A few things that have helped me is that
1) I’ve invested in a grounding mat for my bed
2) I’ve bought the night time cbd from trip on their website. Gives me a better sleep most of the time but don’t expect it to work on day one. If you can get the cbd and magnesium drinks too they help loads
3) I take high vit d supplements you can get them from home bargains
4) try and get outside for a short walk, if only to take the dog around the block slowly. It’ll make your mind feel better. Push through the fatigue and pain and make yourself do it if you can. My feet, knees and hips kill but I know if I take the dog out they’re still going to kill but my mind will feel better than staying inside all day.
5) I have the ibuprofen cream that I rub into wherever is hurting and I take paracetamol/ibuprofen alternately throughout the day. And I take amitryptaline around 5pm because any later and I can’t wake up the next day without feeling like my head and body are stuck in glue
All these things collectively have made me feel a little more positive. So much so sometimes I get a day or two where I feel like the old me and I’ve got loads of energy and no pain and can do something fun with my kids. They’re the days I live for.
In regards to work, maybe put your mind at looking at something you can start for yourself that doesn’t have a time barrier because some/most days you will feel like crap and just not be able to be in paid employment but if when you are feeling able you can do something on your own initiative (write a book/painting/make a blog/vlog don’t know but you get my drift) it’ll give you something to focus on and hopefully some extra £ too.
Hope you’re ok. Here if you want to let off steam xx
Hello my fellow fybromyalgia sufferer.I hope you are having a reasonable day today. I was diagnosed over ten years ago and like you, I worked for quite sometime with no real disturbance to my life. The cocktail of drugs helped me manage and I continued my full and varied life. 5 years ago, out of the blue life took a turn and I had three bouts of covid in succession and it triggered my fybro into a permanent flare-up mode which sent me into a long term sickness cycle. Like you, when I was able, I tried everything my mind and body would allow. I fought to return to work starting with one day per week which baffled my firm at first, they were only interested in 2.5 days per week. I had a supportive GP, occupational health team and manager who allowed me back to work in a super numary fashion who allowed me to slowly creep up to the recognised hours. I also joined a nuffield wellbeing gym pain management course and that was super helpful as there was access to the super warm swimming pool where I wouldn't only swim but sometimes just march up and down in the water, kicking my legs and swinging my arms. I could then sit in the sauna or steam room and feel the heat right through to my bones. Please try not to despair with time and patience you will be able to accept your new normal and have a fulfilling life, contributing to the world of work the way you want to in your chosen vocation. I choose to accept that this is life's way of telling me to slow up and give myself some care. Every day feel gratitude for each little win that keeps you moving. Try to keep smiling my friend. Things will get better for all of us with this dreadful condition. Only this week there has been news about the research being done to reverse this condition. Take care.
Hello. So sorry too read this and the saying between a rock and a hard place I can empathize as so many people will too, it’s beyond hard when you have been doing a full time job and this horrid condition comes along and changes our life’s . We need a good rant too get out how we are feeling and people have been where you are now. I cannot lie and not say how frustrating it is on a daily basis and not knowing from one day too the next how it’s going too be. I am at home aged 63yrs and home mostly has become my haven . This fibro has taking away a lot but I do find days I say too myself I’m gonna fight from within and your not getting all of me. I was diagnosed with CFS as well . I hope soon you hear from the DWP soon healthunlocked.com/fibromya... here is a link too read xx
hi just wanted to say i have the same symptoms, toes hips migraines, I could go on but it would be just the same as reading your own post so I want to say I’ve had this for 24 yrs and you get by day by day love Miriam ❤️
thank you all for your replies, it helps to know I’m not alone and others are facing similar challenges. I wish you all well …. One day at a time indeed ♥️
Hi Lauren I totally understand where you are coming from because practically the exact same thing happened to me !! [ Bar the regular cluster headaches] you say you couldn't tolerate Duloxetine..? This is a mood stabiliser as well as helping with pain and I found REALLY HELPED with coping with FMR symptoms on a daily weekly monthly basis.. Amitriptyline at low doses Rx for pain doesn't help with mood [it's far too low] & s/e are morning drowsiness which won't help! If you maybe felt nauseated from Duloxetine you can always get anti nauseated pills to help the s/e only last a week or so.. definitely worth trying them them again. What other pain meds are you on? The one drug that makes an enormous difference to nerve pain is Pregabalin! I was Rx plus I'm on Tramadol & Duloxetine I'm not cured but I'm not in severe pain or on verge of suicidal!! Any questions plz ask x🥰
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