I was diagnosed with fibromyalgia over two years ago, it seems since May 2021 I have had no reprieve, the pain continues day in and day out, I know a flare up shouldn’t last this long, however I am starting to doubt if it could, over the past two years it’s been one pain after another, and each time and after tests and bloods it’s put down to “fibromyalgia”.
I’ve had costocondtitis at least half a dozen times each one lasting 2-3 months, I’ve had planter fasciitis which doesn’t seem to go away, I haven’t slept well since, back pain, shoulder pain, cramps, throbbing and burning joints, migraines, and IBS ofcourse, I’ve tried medication after medication, meditating, breathing exercises, regularly exercising and being somewhat active, pain management techniques, acupuncture, massage, you name it I’ve tried it, however nothing seems to help! I think what is really pulling me down is the pain in my legs, it constantly feels like I’m walking on glass, my feet are numb and I have shooting pain into my hip, I now walk with a limp and I haven’t even hit 40, I’m losing strength in my arms and being a mother of 3 with a full time job (luckily working from home!) and a hectic schedule it is quite frustrating, I have learnt to prioritise so I’m not wasting my energy on things less important and I have help from my family, but the pain is constant and always there, I don’t have good days and bad days, it’s always just a bad day.
my GP is really helpful and has been trying different medications to help, however it doesn’t seem to help or I cannot tolerate the medication!
I know this sounds like many of us on this group, it’s just really frustrating at times 😞 sending you all gentle hugs ❤️ and hoping you are having a better day
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MS_2019
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Good morning, if I may just pick one thing out of your list that I would suggest you look into further is the plantar fasciitis.
I have suffered with that agonising pain in the feet for as long as I can remember. It can greatly effect your legs, hips and lower back.
For many including myself it can not be fixed. But if you get the proper fittings for your shoes it can be managed.
Depending on how bad the feet are (I have very flat feet no arches) I had to have specialy made orthotics made. This was done by having plaster casts taken of the feet. The the orthotics were made with the right fit and lift.
Which when put in my shoeslifts the feet and stops the pain in all the leg and hip areas including the knees.
The biggest draw back to been pain free was the orthotics are quite large and I tend to live in my trainers. No pretty summer sandles or flip flops for me I'm afraid.
But I am happy to be relieved of the pain. I found buying those thin othotics or even the gel one nogo for me no way do they have enough lift under the arches.
I would seriously look into your feet again If I was you xx
Many thanks Dizzytwo, I have altered my footwear and have bought trainers with arch support and I felt it did help for a while, even during my last visit my GP commented that I am wearing comfortable footwear, I sit with my feet supported whilst working and do the stretching exercises as much as I possibly can, however I will look into it further and hopefully it helps xx
Hi, my trainers also have in built arch supports. But for many people with arch problems that kind of support is not enough. Thats the reason why I have added extra orthotic support. It was just a thought xx
Many thanks and I value your advice greatly, I will look into it for sure, at least if it helps me walk with less pain and less of a limp, it would be a move in the right direction (I hope 🤞🏻) xx
You literally sound like me, I have just hit 40 and have been suffering for just over 6 years to try and find out what is wrong. I'm still waiting but fibromyalgia is the word that keeps being mentioned. I too have 3 kids all boys but I don't work as I can't even cope looking after the house and running around after the kids, and I too am not getting even a snippet of a break from pain and my feet are the same, feels like I'm stepping on a nail so have been walking on the edges of my feet, I have a limp due to my hip pain, back pain, hands, shoulders. My gp put me on pregabalin 300mg twice a day to try and stop the shocks I have and my tremors as I have essential tremor, all it does is helps me sleep at night but still feel like I haven't. Codeine is my only saviour in the morning. Wish I could give u advice but I can't, I need some myself. I'm currently with a physio trying to get to the bottom of it but fibromyalgia is mentioned and more bloods taken, feels like I'm going round in circles. Try and have at least a tiny bit of a good day 🤗 if it's possible 🤞🏻
I was on pregabalin and the dosage just kept getting higher and higher, with that the side effects were also getting worse so I opted to come off it 😞 I have been given other medications but I can’t tolerate any of them, I’m not expecting this last rounds of bloods to show anything and expecting to be told it’s the fibromyalgia, it just can get really frustrating not knowing what to do to feel better, I hope you manage to find something that helps , stay strong and sending gentle hugs xx
I’m sorry you’re suffering so badly. Unfortunately I can’t offer you any advice as I’m in the same boat, I have pain everywhere including both feet. I tried to explain it to my gp and said it feels as though I have plantar fasciitis in both feet, sciatica in both legs, carpal tunnel, tennis elbow and golfers elbow in both arms and that’s without all the pain I feel in both knees, hips and entire back and neck! It’s exhausting and frustrating and the one good thing we can benefit from is having a lot of people who understand on here.
I find I get a lot if “get out for a walk” or “You need some fresh air, get a hobby”. Or so and so has a bad back, they went out walking everyday and now it feels better. I do go out walking and sometimes it’s ok while other times I end up in so much more pain. I wish it was that simple!
I’m on pregabalin and it’s slowly being increased it’s helped a little with some of the nerve pain but not all. I have to take codine first thing in the morning like coffeemum as I can barely move for hours. Although all doctors and physios have said I need to stop taking it as it doesn’t help. It does help me even if it’s a little bit I think it’s worth it. That’s my opinion though.
Anyway sorry I can’t be of any help but I do feel your pain “literally” and I hope it’s helped knowing you’re not alone. Sending gentle hugs xx
that’s literally what’s happening with me, each pain is diagnosed but nothing can be done to help with it besides being given pain killers 😞 zapain seems to be my only reprieve, it doesn’t make the pain go away but it does ease it a little, at least enough to try and move! I too have been told to get out and move more as it would make me feel better and I would be able manage the pain better, however every time I walk, do yoga, swim or even use a treadmill it aches, I’ve been doing it at least 3 of them every week for a year now and I’m not feeling any better if anything I feel pain every time I do anything, so I completely relate, just trying to find the light at the end of the tunnel, hopefully it’s not too far away xx
Many thanks ❤️ I do try to rest as much as I possibly can however even that is too painful 😞 if I’m immobile for an hour or so I get very stiff and I get shooting pain through my back and legs, along with pins and needles in my hands and feet, no reprieve, unfortunately I’m not getting much sleep either because of the aches and pains xx
hi there. I too have plantar fasciitis along with everything else lol. I also have a couple of lower discs in my back worn away and visit a chiropractor regularly and mentioned the foot pain to him. At the time I was having steroid injections in my heels every few months which was hell! He uses a company called Footlevers for orthotics and I only had to stand on a machine to have my feet measured and I few weeks later I had my orthotics. They are so comfortable, I use them in all my shoes and haven’t experienced the excruciating pain since. That was about 4 years ago and I have the same pair. They were quite expensive at about £170 but so worth it.
Hi MS_2019So sorry to hear your pain is so relentless. I had recurring plantar fascitis. I had a physio referral who suggested a foot roller designed for the problem. It was painful to use at first but that and Epsom salt baths got me through.
I used a physio dvd too for posture.(I have other conditions)
Then proper support from footwear has got me back outside with nature.
No return of foot condition in last 3 years.
Thinking back, having hope that I would get some of my life back helped a lot.
If you can a physio appointment and orthotics may help.
Many thanks, I am at physio for my shoulder pain, I’ll mention it at my next appointment 🤞🏻 I don’t lose hope on having my life back (or at least some normality) and I will definitely be looking at orthotics xx
Just wanted to add that some of us don't have flares, I don't, I have continuous pain. It does get worse the more intense exercise I do but I do intense exercise pretty much everyday so that it's pretty much continuous anyway. I've had fibro for over 20 years and I don't have these these waves of fibro pain that other people describe, it's always there.
It's weird isn't it? Even though it's there all the time it does tend to move around my body so it's still unpredictable, it effects my thighs a lot but I reckoned that was just because they're the largest muscles I have...
Hi Cat, I hope u don’t mind me jumping onto your response. I too suffer constant pain but as I’m fairly early into my diagnosis was hoping I was just in a very long flare. I had hoped I would have periods of being pain free in the future but according to what you’re saying this might not be the case. I wonder how you manage with the intense exercise? Do you find the pain eases while doing it? I can’t imagine how you find it in you to push yourself to do it every day knowing you are going to suffer. What’s the payoff I wonder? I’m hoping one day I can exercise again so eager to know how u manage. Thank you. X
Hello las20, I think there are some advantages to not having flares in that you kind of know what you have to deal with. So you aren't seemingly normal one day and then crippled the next. It does seem most people on the forum do have flares but there are some others like me, so maybe flaring is more just common?I have a lot of other things wrong with me, I have Chronic migraines, IBS, Bladder Pain Syndrome, Osteopenia with severe spinal fractures, terrible insomnia etc mental health problems. I find the mental benefits to exercise outweigh the increase in pain later, sometimes intense exercise makes the migraine go away for a few hours too it also helps with the morning stiffness and insomnia.
I was advised many many years ago by the pain clinic that if I can get my heart high for at least 20 minutes a day this can bring down the level of pain down a notch. I have to do weights to protect my bones and when I'm stronger my hypermobile joints don't hurt as much because they are more supported by muscle rather than just the crap ligaments!
I also love doing gym classes, with the music and other people around me, it really helps me feel like I'm able to take part in life a bit more. I do Wing Chun kung-fu 3 times a week in the evenings so it's nice to be a bit stronger for that too. I swim a lot aswell.
I have two small children and back problems so being stronger helps me lift and carry them. I have back exercises I have to do everyday to stop a recurring back injury from returning.
Basically I have to exercise whether I like or not I guess?
I don't have a job though, I was five and half stone when I graduated so no hope of pursuing any kind of a career. I couldn't cope with the stress. We were thinking I could maybe look for job when the youngest starts school but it's clear I'm not going to manage that. I'm very bad in the morning bc I'm so bad at sleeping.As a side note I was on Pregablin too I had horrible weight gain with it though, went from anorexic to the heavier side of my correct bmi. Which I know is supposed to be good and I'm hoping a lot of the extra weight is muscle but it's alarming to look at a very changed body. Plus I'm 45 now so I guess I'm just going to have to get used to that!
Exercise is what keeps me more mentally well but it's not everyone's thing. Find what makes you happy and do as much of that as you can. Depression opens up the pain pathways to the brain. Literally the sadder you are the more pain messages your brain receives. (So my neurologist tells me) Being happier is more important than being fit.
I'm in my 40's too and I also have constant pain rather than the flare ups. I'm on maximum hrt too and my body just laughs at that so called miracle cure 😏. The only thing that helps a little is heat. I can't tolerate the medication either. Fortunately my kids are now grown up (they are still at home though making work and mess but nothing like when they were younger!). My heart goes out to you hun and wish I had a magic wand for us all. All the best with your journey to feeling some relief, don't give up X
I feel your pain. Literally. I don't seem to have a free day of pain, and taking painkillers like there sweets. That then brings on the constipation. Tired all the time, but come bedtime can't sleep. I am thinking about contacting doctors again to see if there is any other painkillers I can take. I am on Zapain and Amitriptaline.Has anyone found any other meds that might help ?
I’m on Zapain too as I didn’t find anything else help much, also most medications made me feel drowsy and I couldn’t seem to concentrate (not that I can much anyway!) it also brought on many side effects, I do take supplements too, vitamin D, magnesium and st.John’s wart, constipation is the worst, you can try taking Fibogel might help a little, sending gentle hugs xx
Thank you for your input. I do take vitamin D also. Not tried the others though. I was on a constipation medication that you had to mix with water and drink, but it made me feel sick. I do buy over the counter constipation remedies, either in tablet form or suppositories, but don't like to use them on a daily basis.I guess it's like all of us, we try what we can to help ease the symptoms.
Hello, a lot too juggle with a full time job and young family , I can read you have tried 100 percent trying too move forward so I have so much empathy for you with a such alot on your plate on a daily basis, a very helpful reply from Dizzytwo @ glad you have a support family . Just sending some hugs after reading your post xx
Hi, just wanted to add I'm another member of the constant pain club. Sometimes though I do think it is easier to cope with as you know what you're dealing with most days. Some days it can go higher, legs in particular if I've walked a lot at work.
Don't think PF ever does go away, though the exercises do really help and good footwear is essential as Dizzytwo has already said. I live in trainers too , mainly Skechers Archfit and crocs flips.
For boots there's a few online that you can add your own orthotics. Heavenly Feet is the one I use, prices are reasonable and they're cruelty free.
NEVER walk in your bare feet, always supportive footwear was Podiatrist's mantra!
hi I’m also always in constant pain day and night.I cry most mornings as I can’t see me bearing it for years to come.I take morphine codiene and amitriptyline each night.I had total hip replacement 12months ago but need knee replacement and right hip but other knee now started pain in boths knees at night wake me after 2 hours each night every night the same.I always get up and think positive but then the body rages and I get irritable and have to take more codiene and stop I’m always saying I’m so tired but I don’t want to be I truly don’t I never go back to bed as I’m no better there help also my left foot is so damn painful I can’t bear to stand on it just another problem my body is giving up on me,and I hate my body now also need hysterectomy I feel devastated
So sorry you're hurting so much Bondbug, it's just so 😩😩😩😩! So many things at the same time must be overwhelming, maybe time to speak to your GP again for more support, both practical & physical ?
Thank you for your kind words.Overwhelming is exactly the truth.Ive been pain clinics and that didn’t help,had counselling 2years ago but I have deteriorated so much since then.I have noticed past few weeks that my thigh which had replacement is fatter than my other not pink or hot just fatter and when I lie on it it feels tender,i had absolutely no pain at all when it was done and surgeon said it was the worse one he had done.This all started when I was 45 I’m now almost 54.Ive asked for all my surgery to be with same surgeon as he knows how bad I am.
I’m so sorry you are in so much pain 😞 and I hope you get some reprieve 🤞🏻, I finally managed to get a proper diagnosis and turns out I have Sjögren’s syndrome, Raynaud’s disease, lower back athritis and suspected small fiber neuropathy! So it was indeed more than just fibromyalgia 😩 my advice would be to always push for the right diagnosis, not everything falls down to fibro, sending gentle hugs and I hope you have a better day today ❤️
Thank you so much I needed a gentle hug.I say everyday that I feel something is being missed.I take vitamins,collagen tablets 8 glasses of water each day,no take aways,home cooked food veg and fruit.I just wish I could walk ,ride a bike or jog as I think my 12 stone is because of my meds and lack of excercise.I have struggled to get through to medical professionals for 9 years and it wasn’t until the surgeon done my hip did he realise I was so bad but again thank you and take care
It sure grieves me to read the description of what you are going through💔Sounds as if nature is giving you a terrible time. I certainly hope you start having more good days than bad. Gentle hugs to you, friend, from America 🙆♀️
I can relate to a lot of the issues you mention & can totally empathise with what you're going through.
I have set my expectations much lower now as you 've said - every day is a bad day & have said exactly the same myself.Just celebrate the small victories now & keep going a day at a time .🙂
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