I’m looking help regarding medication or health alternatives to manage pain. Here’s a bit of background after years of going to doctor I was diagnosed with fibromyalgia in March 2020. In one way it was a relief because I honestly though I was going round the bend and I think my family though pt it was all in my head eg headaches, joint pain, confusion, forgetfulness, tired all the time not to mention losing my balance and falling but I think this was primarily due to me being tired and sore joints when moving. Anyway I tried (emphasis on tried) to manage this with exercise, healthy eating , mindfulness etc. though I was really struggling. I felt so low and at times despondent, but I kept going (my husband had concerns saying how long are you going to try to fight something you can’t ) but the truth was a didn’t want to give up.. anyway this was all to change when one morning I stepped out of my front door lost my balance and fell.
I needed to be taken to the hospital and after an X-ray I was told I hadn’t broken anything but it was rather more a sprain. They put my foot in a boot and told me to come back in 10 days for a review. The 10 days were hell I was in agony ( forget gym and mindfulness and definitely no sleep). Pain relief wasn’t working I was exasperated. Went to my review, at this stage my foot was still very swollen, very bruised and I couldn’t put it to the floor ( combined with all the other things that Fibromyalgia kindly brings, ) I was ready to tear my hair out. Anyway my X-ray was review and they said oh you have fractured your big toe but it will be fine in 6 weeks. I explained that my foot wasn’t right and the pain was unbearable, nonetheless I was dismissed with more painkillers and told to get out of the boot and start walking on my foot and it will feel better. Fast forward 6weeks and I’m rushed to the hospital my foot was still swollen I wasn’t able to put it to the ground it was hot and ready to burst…. Turns out I had an misdiagnosed injury called a Lisfranc…. Three plates, 12 screws and a mid foot fusion later and I’m still in pain. Combine this with the fibro joint pain and the extra pressure I have been putting on my other foot ( which is also swollen ), wrists using crutches and my knee when I had to crawl everywhere.. they have told me I have neuralgia, I’m still in a boot and people are saying surely you still don’t need that boot ( I’m in the process of transitioning to a shoe but I put it on and the midfoot begins to swell and looks like I have an egg on top. I’m very weepy I feel totally overwhelmed with the fibromyalgia and it’s been exasperated by the injury in addition to having permanent nerve damage I just don’t know how to manage this. I’m currently taking amitriptaline, codeine , paracetamol and powder to stop constipation.. I can’t move quick enough to manage the stairs to get to toilet and accidents are happening.. what else can I do to manage this..
I work part time but in order to do this I spend the rest of the day in pain, exhausted with my foot elevated. I really feel I’ve no quality of life, I’m struggling to work because I need to and I’m struggling dealing with people saying you need to get on with it just get up and walk… if only I could 😞
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Hamer5
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Hi there Hamer5 , you poor thing! You’ve really been through the mill!
As if Fibromyalgia isn’t bad enough, a Lisfranc injury on top of that, and especially undiagnosed for so long (I had a Lisfranc many moons ago when I was a runner). You must be at the end of your tether, and so stressed out! that in itself will cause muscle tension and pain.
I would suggest first and foremost to politely inform all the people, who think “you should be over it all by now and just get on with it“ to mind there own business! and if they can’t say anything helpful, then say nothing. Also add that their unhelpful advice is stressing you out. Sit down with your husband and talk through a way that you can both manage to deal with the Fibro, and your injury.
Regarding your Fibromyalgia maybe a review from your GP, or a referral to a Rheumatologist or a Pain Clinic might be of help. Pacing yourself to do things little and often with a break in between can also help. The medication you’re taking is often used for Fibro, and maybe you could ask if you could try Gabapentin or similar, to help with the nerve pain. Heat pads on sore muscles, or a Magnesium Jel rubbed in might also help. Are you able to use a bath? hot baths with Epsom Salts added help with muscle pain.
Unfortunately for your injury, you can only do what you can with the advice you’ve been given by the hospital.
From what you’ve said, I don’t think that you’ve fully accepted the diagnosis of Fibromyalgia and you’ve been fighting against it? Acceptance is the first step in making a plan to manage Fibro, and everyone is different in the way they learn to manage a chronic pain condition.
You’ve mentioned you have to work. In order to do this safely, and effectively, you must organise your home life, and your work life in a way that doesn’t stress you out. (not easy, I know). Is it possible to have have some sick leave?
I wish I could be of more help, but some of the other members might be able to add some helpful suggestions.
Talk things over with your husband about how to deal with the unhelpful advice being given by people unqualified to do so.
Good luck, and come back on here to let us know how things are going.
Thank you for your reply. With regard to work I was off for three months while I was in a cast , in fact they wanted me in when I was in a cast and non weightbearing . My cast came off, I had one day of phased return then back 5 days a week. I’m struggling now and I feel the only option is to hand my notice in .
I haven’t been able to get into a bath the OT supplied me with a board that sits across the bath and that’s how I get washed. I use grip rails to pull myself up and they have fitted rails outside my home to help me get outside.
When I asked physio about swimming (cause I thought the exercise would help, low impact on joints etc and help me learning to walk again ) the response was ..
‘well you can bomb in but you will have problems getting out because you can’t bend your foot’.
Trying to get a doctor is impossible I have to speak to the receptionist anD tell her the problem. If it’s more than one problem I’m told the doctor can only speak about one thing!
On a plus my husband has been totally amazing and definitely my rock.
I agree a great feeling when you can put a label to a condition for me diagnosis was strangely refreshing and the start.
Good thing now is you have something to work with, you can associate with fibro symptoms and start your recovery.
It is a tough and windy road at first but YOU will take control of this condition. ups and downs are part of the journey.
What helped me is to breakdown your symptoms and triggers. Some will be obvious, some take a bit of working out.
Fibromyalgia individuals frequently carry multiple diagnosis’s, Fibromyalgia is a syndrome that generally carries with it a number of co-morbid conditions.
Taking control by understanding your symptoms and triggers, maybe working with your husband in noticing behaviour or mood changes can help, it was good for me and my very understanding partner.
Making a physical note of where you are now is essential to start your recovery, setting some goals to achieve as you go helped me too, be realistic careful not to over stretch, ( I know this will be frustrating at times) but YOU are now in control, the other point I found is acceptance of my circumstances, very difficult at first, bit of denial for me, you will find your way trust yourself.
Main thing is to keep at it, that is making a note of how things are going, two fold for me, after time you can look back at improvements and secondary it reduces the worry and rumination that can effect your psychological health. CBT and pain management are helpful, I posted a link to a free online course, you can study yourself, This course is self paced and rewarding. Take a look back at one of my other posts for the link to Futurelearn the on line learning platform. Learning is a great wellbeing boost for me too. Good luck warrior.
I would definitely agree regarding the co-morbid conditions, I have autoimmune thyroiditis, just had a biopsy and diagnosis for lichen planus oral ( two years waiting for biopsy) before I could be treated . The maxiofacial consultant was concerned about the rash I had on my face and the rashes on my skin he has been taking more blood tests .
Hi, I am amazed at your diagnosis, really, to hear you have received this break though with the diagnosis of other conditions, I applaud you for your grit and determination.
Obviously no easy task juggling these symptoms but what a relief, my experience has been less rewarding so far, despite I know/or feel there is other conditions due to my symptoms, I cannot get the correct diagnosis or treatment.
Hearing the time it took you (2yrs) has given me confidence to keep at my GP for help, especially in light of your recent diagnosis. Well done you!
Like other members on this forum the prospect of a blank face and the standard reply "no evidence for fibro" just promotes a feeling of lets give up, well it does not cut it for me, you only get one chance at this journey.
I shall keep at it, especially as the idiomatic expression that medical evidence rules!
Clearly in your case medical evidence does not rule, comorbidity has been proven for individuals with fibromyalgia. Thorough research and tests need to be carried out on each individual, for correct diagnosis and treatment for your conditions are treated effectively and not hidden under the umbrella of fibromyalgia.
What a terrible ordeal for you, sounds very painful and I really empathise with you. I had a similar thing happen to me; something very heavy fell on my foot at work years ago, I broke my first metatarsal and it still hurts occasionally now.
You know your body and you know what is best for you. People still don't understand Fibro that much and it can be so frustrating but listen to your body not them as they don't experience what you feel.
I've found that doctors don't always know what's wrong or how to fix it, I've also found that some people can actually have an immunity to painkillers like codeine.
With my Fibro, the more stressed I get the worse my pain is, perhaps this might also occur with you too? It sounds like you've been through a considerable amount and that no one is listening to you or taking you seriously. Very frustrating!
I know it sounds strange but if I meditate or clear my mind for a while the pain seems to ease. Its like tricking or distracting myself/brain so I'm not always so focused on being in pain.
If you don't want to try this then maybe I suggest getting a second opinion from a doctor or perhaps vitamins and supplements. A bit of self care sounds in order.
I’m sorry to hear you had similar, it really is a challenge. Like they say never judge a person until you walk a mile in their shoes.. trust me if they try to walk with my feet they wouldn’t even last a 100 yards. I think my body is responding to all the stress it has been under and while I may not feel stressed I think,I am . The perpetual circle continues worry stress pain.
Sorry to hear about your problems which seem common to contributors to this column.You raised two issues, upon which I would like to comment.
Firstly my wife has several medical problems, including poly myalgia.
Constipation is a very real problem, because of the very heavy medication. For the first time, my wife has found natural resources to deal with constipation. She takes figs-usually two a day: a handful of nuts and bran for breakfast. It does seem to work.
The other point you raise is about your toilet, which appears to be upstairs.
Have you looked to see if a toilet could be put in-obviously if you rent (privately) this may be an issue. Otherwise financial help may be available.
But there are other answers.have you looked at the chair which incorporates a small loo seat. Don’t ignore second hand seats which may be for sale at a very low price.
Lastly, please consider a portable loo. As an ex boat and caravan owner, a portable loo can be very useful.
Hope that some of this helps.don’t push yourself too hard!!
Hi and thanks for your reply. We do own our own home and I was aware you could get help. I having to buy lots of Tena pads ( not a nice subject ) as a safety measure. I am lucky and have two commodes one which stays downstairs and the other outside the back because I have so many steps all around the house. oT fitted double rails out my back so I’m very grateful for all the th8ngs I have. I think a lot of this is mental adjustment. I do take prunes in the morning to no avail , so I will try the figs, thank you for the tip😊
For the people around you they’re ignorant and sound like they lack empathy and aren’t even worth you keeping their misgivings in your mind it’s clear you have been trying to mange it all your self and you are commended from me to be trying to work and get up every day and carry on 👏👏👏👏👏👏👏👏👏👏👏👏👏 it’s one of the biggest things I read feeling like you are some sort of crazy person writing this is your world to new information from people that do understand and this in itself is good medicine for your mind I like to keep my thoughts and words on here my space I have not told anyone outside this forum I read and comment on here it’s like having a comrades in arms packed with experience and tried and tested remedy’s or just rest bite from the work outside Don’t think you are going crazy don’t let others words bring you down look for little moments of peace sit quiet and draw on these things it may only be for a few seconds but keep building on how you feel when you’re in these moments
I centre in on one little pain and try to numb it out sometimes it takes longer I sleep wherever I can in a chair instead of bed even if it’s 20mins it helps I do hope you find peace with your pain I could go on but feel I would be rambling x
Òh my dear, what agony you are going through. I can offer no advice but that my husband & daughter are going through the same pain so I understand what you are going through minus the big toe. Sending prayers 🙏.
Hi Hamer5I can completely understand how you feel. You've had lots of good advice already so won't add to that. However, with regards to codeine , that can have certain side effects, constipation, dizziness etc. So maybe there's a better alternative without those side effect? Best ask your Gp.
I notice someone has mentioned magnesium gel, and there is also magnesium oil. Sadly I found both made my skin itch so I had to look for an alternative. What I would suggest is you try magnesium malate as it's more easily digestible compared to other forms. You can buy it in powder form so there's none of the fillers & binders.
Working out a dose which would be right for you is trial and error. I take 1/8tsp morning & evening ( dash spoon size) to help with constipation, it seems to work for me., without the sudden... I must go!!!! Plus magnesium is very good for pain.
The last thing you need on top of all the pain is the indignity of getting to the bathroom in time... it's no joke.
The other thing you might look at is to have a look if there's a hydrotherapy pool near you as that's supposed to be quite effective.
I do hope life with become a bit more bearable in the not too distant future.. thinking of you x
Thanks for reply, I do take magnesium but I didn’t know you could get it in powder form. I think because I’m trying to balance work etc the recovery and therapy is harder. Not so easy learning to walk again. I think if my mood was lifted I could manage better but do ever get a sinking feeling when you are trying so hard to keep your head above water and you flapping like a duck. I had two feet to do it before but I’ve only one foot now and I feel I’m fighting a losing battle.
Hamer5, oh i wanted to cry for you.i hope yu find what works for you.I know in ultimate stress sleep so important and do what brings some relief. elevation helps me but that is me, i use heat instead of ice but again ice is medically prefered.i had never heard of this lisfrac and you have helped all become more educated. i thank you for the share. my true prayers are with you and those around may be the best support.
Thank you for your kind words. Don’t worry about not knowing what a Lisfranc is, you would be surprised at how many medical professionals ( at A & E) I have encountered in the past 8 months who didn’t know what it was, yet it is very serious implications if missed. Many many years ago the treatment was amputation 😬. Thanks to Jacques Lisfranc de St. Martin who was a pioneering French surgeon and gynecologist we no longer have such drastic measures. Hopefully for all those reading my post, if you fall, check for a mid-foot injury. Bruising from underneath the foot along the arch can be indicative of this injury.
For myself is wasn’t a big fall , I merely over pronated my foot and it rolled inwards. Everything was very slow motion that day however, the ramifications linger as learning to walk again is very very slow😓. Take care 😊
I sympathise with you Hamer5. I too live with FMS/CFS & have for many years. Also, going through Menopause! And recently stress incontinence. Sadly, like others I am left to get on with it! Family,Friends & Medical professionals really don’t understand it but then again, even I don’t! Anyhow, I fell on an uneven walkway on Holiday abroad 4 yrs ago. Despite having X-ray in A&E abroad & then again in A&E they missed a lisfranc midfoot injury. I went to an orthopaedic consultant who noticed it. It was during COVID so it was just left. I still get pain,swelling, Achilles’ tendon pain & hip pain from walking differently. This on top of FMS/CFS has negatively impacted my already crappy health. Couple of things, have you had an occupational health appointment through work? If not, it might help as they may be able to with ways of working /can you work from home? Are you near retirement age? In a pension scheme with Medical Retirement consideration? I’ve not asked for this because, I am paranoid that it will be an admission I am struggling to do my job & that if I was turned down for it, they would sack me! I’m paranoid these days after so much time off work on long term sick & having to fight work has made me more ill. I applied for PIP & was rejected. The Government should help us retire early rather than leave it up to Employers /Employees. Thankfully, I can otherwise I wouldn’t be able to do the 4 days I do. And recently, I have found that if I wear a arch support in my shoe (bad foot) somehow it helps with the pain & after exertion pain. I just bought it from scholl shop but you can order them online. I think it’s because of being left with a flat foot after the injury. I still limp now but I am told my tissue will have healed by now! So, basically, that’s saying your lying 🤥. It’s awful how everything is put to FMS/CFS once your diagnosed. I know it’s an emotive subject but have you thought about a medical negligence claim? I might’ve if I didn’t already have Co-conditions. I wish I could help you resolve your medication conditions (and everyone else’s 😌)
You really have had an awful time. Life can be challenging enough but when your faced with additional setbacks and lack of understanding from medical professionals it adds insult to injury. My orthopaedic consultant has been very good, he recognised the serious injury I had and the negligence from the start and in fairness he has been supportive.. I can’t walk without a stick and have been struggling, the consultant referred me for orthotics because I was continually complaining about the stinging pain in my foot and lack of stability. Sadly the appointment didn’t come quick enough to get the support for my foot and my metal wear has now broken 😞 (one year from the original injury) and I’m back in an aircast until I see the consultant at the end of the month .
My work has been great the girls are wonderful at how supportive they have been, however this won’t be forever because financially it’s not sustainable and I understand that. My husband has now reverted back to working from home to help me . I don’t have facilities for washing and I can’t climb into a bath so he has to help me. When my doctor got the report from the hospital re the broken metal work he was straight on the phone upping my pain medication.. I have been on longtec for a year now and just recent,y weened of the shortec to have to go back on it . I’m on 50mg of amitriptaline and tablets to stop the bladder urgency because I can’t make it to the toilet in time. My husband manages my medication and reminds me to take it and watches me because I do forget and there have a been a few times when I thought I hadn’t when I had. I really don’t know how I could or would manage.
I am really panicking about the future and the prospect of going back under the knife to have my foot reset and the broken metal work removed is really scaring me. I did apply for pip and my consultant also wrote a report in support because he knew exactly the extent of the damage done to the foot and the help I needed. I was granted mobility but not care being 1 point short of which my husband has lodged an appeal because they said I didn’t need help with the medication and that was not what was said during the assessment and on the form . That being said if I could hand it all back and have my life back I would do it in a heart beat.. I can’t go out not without someone with me because I need help.. I’m battling with my mental health over this but sadly it’s not recognised. Any individual that says it’s no big deal I challenge them to have a Lisfranc injury because I can guarantee they would soon be handing it back in 24 hours…. Everyday is a challenge but stick with it take one hour at a time and if it’s a bad day, tomorrow will be better. It takes great strength you will get there your stronger than you think. Thinking of you 🥰
Thank you for your understanding & supportive reply. I’ve run out of energy for today and my mind formulated a response but I am too exhausted to type anymore. I know you will understand how this happens with FMS/CFS x
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