Fibromyalgia - pain relief
Discussion
Hi,
I have finally after 15 years been officially diagnosed with Fibro, that in itself has been a painful journey excusing the pun.
I have a wonderful GP who is absolutely amazing on so many levels and was not at all dismissive when I suggested this diagnosis to her after visiting her with a long list of minor ails over many years but when added together were making my life not so easy. She ran every test there was thoroughly and I saw several other GP's in the practice until the all agreed on that's what I had. I had a stumbling block when referred for a final sign off with a Consultant at my local hospital who tried to blame the fact I am overweight on why I had the symptoms I did. I should have complained but but felt that my GP was supporting me, there is no real treatment or even cure so no actual official diagnosis wasn't the end of the world. That was about 8 years ago.
Roll on to last year and things are getting bad, real struggle to walk and given a Blue Badge and really beginning to have an impact on my ability to work so I applied for PIP. Was refused, mandatory reconsideration was refused so my GP sent me to another consultant who was shocked at the previous approach of blaming my weight and having read my history and prodded me a fair bit agreed on Fibro. At Tribunal with this added info I was awarded PIP low rate.
No one seems to agree on the best pain management for Fibro and for me it is now getting really bad. Two nights ago was the worst it has even been, I even considered calling 999 but came to the conclusion that it would be many, many hours before they would arrive as I had nothing life threatening and what was the point calling. I take Pregabalin for restless legs at night and smoother various sore points with CBD gel but in the past I have been loathe to take anything stronger for fear of addiction. I've been offered opiate based pain meds but always refused and after this week I am beginning to think again.
Does anyone else have Fibro and what do you take at night? Day time I can manage but sleep is becoming really problematic and for years my bed was my place of sanctuary from the world, now its the place I dread.
I can barely walk, I am housebound without my car yet I do not qualify for Motability on low rate PIP. I am now at the point I need to seriously start to adapt my house, things like a lift and grab rails - I already have basic stuff like a shower stool/walking stick etc and life is no longer enjoyable. Work is getting harder as it is affecting my hands now so typing and mouse work is not so easy as it used to be and I am sure if I could just sleep better I would function better.
I have finally after 15 years been officially diagnosed with Fibro, that in itself has been a painful journey excusing the pun.
I have a wonderful GP who is absolutely amazing on so many levels and was not at all dismissive when I suggested this diagnosis to her after visiting her with a long list of minor ails over many years but when added together were making my life not so easy. She ran every test there was thoroughly and I saw several other GP's in the practice until the all agreed on that's what I had. I had a stumbling block when referred for a final sign off with a Consultant at my local hospital who tried to blame the fact I am overweight on why I had the symptoms I did. I should have complained but but felt that my GP was supporting me, there is no real treatment or even cure so no actual official diagnosis wasn't the end of the world. That was about 8 years ago.
Roll on to last year and things are getting bad, real struggle to walk and given a Blue Badge and really beginning to have an impact on my ability to work so I applied for PIP. Was refused, mandatory reconsideration was refused so my GP sent me to another consultant who was shocked at the previous approach of blaming my weight and having read my history and prodded me a fair bit agreed on Fibro. At Tribunal with this added info I was awarded PIP low rate.
No one seems to agree on the best pain management for Fibro and for me it is now getting really bad. Two nights ago was the worst it has even been, I even considered calling 999 but came to the conclusion that it would be many, many hours before they would arrive as I had nothing life threatening and what was the point calling. I take Pregabalin for restless legs at night and smoother various sore points with CBD gel but in the past I have been loathe to take anything stronger for fear of addiction. I've been offered opiate based pain meds but always refused and after this week I am beginning to think again.
Does anyone else have Fibro and what do you take at night? Day time I can manage but sleep is becoming really problematic and for years my bed was my place of sanctuary from the world, now its the place I dread.
I can barely walk, I am housebound without my car yet I do not qualify for Motability on low rate PIP. I am now at the point I need to seriously start to adapt my house, things like a lift and grab rails - I already have basic stuff like a shower stool/walking stick etc and life is no longer enjoyable. Work is getting harder as it is affecting my hands now so typing and mouse work is not so easy as it used to be and I am sure if I could just sleep better I would function better.
Sometimes in addition to regular pain medication patients can be prescribed things like
duloxetine - normally used as an anti-depressant but also helps with pain relief specifically in fibromyalgia. As it is an anti-depressant as well this can also help with with mood, improved sleep and quality of life
amitriptyline - used for pain and migraines as well as anti-depressant. Makes you drowsy which again can improve sleep patterns as well as pain and general mood.
carbamazepine - used to treat epilepsy but also "off-label" in fibromyalgia.
It is important that you are guided by your neurologist and maybe GP as well (depending on their specialisms) as the above can be used but may not be available depending on other conditions or general health. Pain is one of the most difficult things to treat and sometimes medication is not always the best idea as self-help, acupuncture and various other holistic therapies can be just as useful and may provide a better overall improvement instead of being off your tits on opiates. CBD may be a good idea as well
duloxetine - normally used as an anti-depressant but also helps with pain relief specifically in fibromyalgia. As it is an anti-depressant as well this can also help with with mood, improved sleep and quality of life
amitriptyline - used for pain and migraines as well as anti-depressant. Makes you drowsy which again can improve sleep patterns as well as pain and general mood.
carbamazepine - used to treat epilepsy but also "off-label" in fibromyalgia.
It is important that you are guided by your neurologist and maybe GP as well (depending on their specialisms) as the above can be used but may not be available depending on other conditions or general health. Pain is one of the most difficult things to treat and sometimes medication is not always the best idea as self-help, acupuncture and various other holistic therapies can be just as useful and may provide a better overall improvement instead of being off your tits on opiates. CBD may be a good idea as well
Thread resurrection some 8 months later. I've been recently "diagnosed" with this. Absolute pain in the arse. My recommendation was to continue going to the gym and stay active and, truth be told, I want to do anything to stay active.
I can't get to sleep. When I eventually do get to sleep, I can't wake up. It doesn't help that I'm partially deaf as well. So every morning my vestibular system is mashed. Sometimes it'll take me literally hours to get out of bed and able to at least eat. I'll have a full ache in my body but worse in my face/head/neck and shoulders, halfway from forearms to hands and shins to feet.
Completely hampers me. But when a little warmed up and able to get on with my day. I Still ache but I just get on with it. But when I'm able, by which time, it's coming to the end of everyone else's normal day.
I actually really dislike this. I'm coming up to 40 and up until a few years ago was fine. They diagnosed me with Menieres disease for the last 5 years and I was on medication for that. Recently taken me off the Betahistine Dehydrochloride (which was an event in itself with fluctuating hearing). Then the beginning of this year said they definitely think it's Fibromyalgia. So that's that. Waiting to hear further.
Not in a good place at the moment as some of the aches apparently are stress related and it's hard not to stress. If I don't work out, I'll get weaker and prone to more illness but working out makes this worse, so I'm in no mans land currently.
Work wise, I'm stumped. Being half deaf with vertigo and with fibro really has limited what I can do. I am currently in the process of somehow setting myself up to work from home with my own business that doesn't involve me doing what I used to do, which frankly I loved. Being able to get up, jump in the car and drive to different locations working on projects was quite fulfilling.
Pain wise, I'm actually only on CBD. Haven't gotten any further as of yet with anything from the GP bar a Body Reprogramming pdf.
I'm keen to hear from others if anyone else, including OP, on how you've managed yourselves.
I can't get to sleep. When I eventually do get to sleep, I can't wake up. It doesn't help that I'm partially deaf as well. So every morning my vestibular system is mashed. Sometimes it'll take me literally hours to get out of bed and able to at least eat. I'll have a full ache in my body but worse in my face/head/neck and shoulders, halfway from forearms to hands and shins to feet.
Completely hampers me. But when a little warmed up and able to get on with my day. I Still ache but I just get on with it. But when I'm able, by which time, it's coming to the end of everyone else's normal day.
I actually really dislike this. I'm coming up to 40 and up until a few years ago was fine. They diagnosed me with Menieres disease for the last 5 years and I was on medication for that. Recently taken me off the Betahistine Dehydrochloride (which was an event in itself with fluctuating hearing). Then the beginning of this year said they definitely think it's Fibromyalgia. So that's that. Waiting to hear further.
Not in a good place at the moment as some of the aches apparently are stress related and it's hard not to stress. If I don't work out, I'll get weaker and prone to more illness but working out makes this worse, so I'm in no mans land currently.
Work wise, I'm stumped. Being half deaf with vertigo and with fibro really has limited what I can do. I am currently in the process of somehow setting myself up to work from home with my own business that doesn't involve me doing what I used to do, which frankly I loved. Being able to get up, jump in the car and drive to different locations working on projects was quite fulfilling.
Pain wise, I'm actually only on CBD. Haven't gotten any further as of yet with anything from the GP bar a Body Reprogramming pdf.
I'm keen to hear from others if anyone else, including OP, on how you've managed yourselves.
Edited by TotalControl on Saturday 10th February 00:42
solo2 said:
Hi,
I have finally after 15 years been officially diagnosed with Fibro, that in itself has been a painful journey excusing the pun.
I have a wonderful GP who is absolutely amazing on so many levels and was not at all dismissive when I suggested this diagnosis to her after visiting her with a long list of minor ails over many years but when added together were making my life not so easy. She ran every test there was thoroughly and I saw several other GP's in the practice until the all agreed on that's what I had. I had a stumbling block when referred for a final sign off with a Consultant at my local hospital who tried to blame the fact I am overweight on why I had the symptoms I did. I should have complained but but felt that my GP was supporting me, there is no real treatment or even cure so no actual official diagnosis wasn't the end of the world. That was about 8 years ago.
Roll on to last year and things are getting bad, real struggle to walk and given a Blue Badge and really beginning to have an impact on my ability to work so I applied for PIP. Was refused, mandatory reconsideration was refused so my GP sent me to another consultant who was shocked at the previous approach of blaming my weight and having read my history and prodded me a fair bit agreed on Fibro. At Tribunal with this added info I was awarded PIP low rate.
No one seems to agree on the best pain management for Fibro and for me it is now getting really bad. Two nights ago was the worst it has even been, I even considered calling 999 but came to the conclusion that it would be many, many hours before they would arrive as I had nothing life threatening and what was the point calling. I take Pregabalin for restless legs at night and smoother various sore points with CBD gel but in the past I have been loathe to take anything stronger for fear of addiction. I've been offered opiate based pain meds but always refused and after this week I am beginning to think again.
Does anyone else have Fibro and what do you take at night? Day time I can manage but sleep is becoming really problematic and for years my bed was my place of sanctuary from the world, now its the place I dread.
I can barely walk, I am housebound without my car yet I do not qualify for Motability on low rate PIP. I am now at the point I need to seriously start to adapt my house, things like a lift and grab rails - I already have basic stuff like a shower stool/walking stick etc and life is no longer enjoyable. Work is getting harder as it is affecting my hands now so typing and mouse work is not so easy as it used to be and I am sure if I could just sleep better I would function better.
My man, cannabis indica will likely help alleviate most symptoms. I don't have Fibro but a good friend of mine does - she has said of all the various drugs prescribed by her GP & Pain Management consultant, that cannabis works the best. And the least likelihood of dependency issues.I have finally after 15 years been officially diagnosed with Fibro, that in itself has been a painful journey excusing the pun.
I have a wonderful GP who is absolutely amazing on so many levels and was not at all dismissive when I suggested this diagnosis to her after visiting her with a long list of minor ails over many years but when added together were making my life not so easy. She ran every test there was thoroughly and I saw several other GP's in the practice until the all agreed on that's what I had. I had a stumbling block when referred for a final sign off with a Consultant at my local hospital who tried to blame the fact I am overweight on why I had the symptoms I did. I should have complained but but felt that my GP was supporting me, there is no real treatment or even cure so no actual official diagnosis wasn't the end of the world. That was about 8 years ago.
Roll on to last year and things are getting bad, real struggle to walk and given a Blue Badge and really beginning to have an impact on my ability to work so I applied for PIP. Was refused, mandatory reconsideration was refused so my GP sent me to another consultant who was shocked at the previous approach of blaming my weight and having read my history and prodded me a fair bit agreed on Fibro. At Tribunal with this added info I was awarded PIP low rate.
No one seems to agree on the best pain management for Fibro and for me it is now getting really bad. Two nights ago was the worst it has even been, I even considered calling 999 but came to the conclusion that it would be many, many hours before they would arrive as I had nothing life threatening and what was the point calling. I take Pregabalin for restless legs at night and smoother various sore points with CBD gel but in the past I have been loathe to take anything stronger for fear of addiction. I've been offered opiate based pain meds but always refused and after this week I am beginning to think again.
Does anyone else have Fibro and what do you take at night? Day time I can manage but sleep is becoming really problematic and for years my bed was my place of sanctuary from the world, now its the place I dread.
I can barely walk, I am housebound without my car yet I do not qualify for Motability on low rate PIP. I am now at the point I need to seriously start to adapt my house, things like a lift and grab rails - I already have basic stuff like a shower stool/walking stick etc and life is no longer enjoyable. Work is getting harder as it is affecting my hands now so typing and mouse work is not so easy as it used to be and I am sure if I could just sleep better I would function better.
So much so that she has given up the black market cannabis and moved to a private clinic, getting a prescription for it each month.
Have a look at some of the UK clinics that offer cannabis for fibro - you can book a consultation and if you're not to be prescribed it, you'll get a refund on the consultation fee - in full.
FYI: you wouldn't smoke cannabis, but you'd use a dry herb vaporiser, or the sublingual oils (these taste very earthy and I couldn't get on with them), or a vape and cartridges delivering specific, exact doses with each inhalation. The best way I've found for my specific issues - and my friend has found for her fibro - is edibles. Curaleaf do their own brand Adven Pastilles which are excellent for muscle pain & nerve pain - but they're pricey.
If you can keep exercising and managing symptoms and pain with mostly cannabis and possibly one of the medications you've listed - for when it's really bad - I think you could be onto a much better managed regimen.
What do you think?
I am a patient at a private clinic so I'm happy to answer any questions you may have on that topic.
TotalControl said:
Thread resurrection some 8 months later. I've been recently "diagnosed" with this. Absolute pain in the arse. My recommendation was to continue going to the gym and stay active and, truth be told, I want to do anything to stay active.
I can't get to sleep. When I eventually do get to sleep, I can't wake up. It doesn't help that I'm partially deaf as well. So every morning my vestibular system is mashed. Sometimes it'll take me literally hours to get out of bed and able to at least eat. I'll have a full ache in my body but worse in my face/head/neck and shoulders, halfway from forearms to hands and shins to feet.
Completely hampers me. But when a little warmed up and able to get on with my day. I Still ache but I just get on with it. But when I'm able, by which time, it's coming to the end of everyone else's normal day.
I actually really dislike this. I'm coming up to 40 and up until a few years ago was fine. They diagnosed me with Menieres disease for the last 5 years and I was on medication for that. Recently taken me off the Betahistine Dehydrochloride (which was an event in itself with fluctuating hearing). Then the beginning of this year said they definitely think it's Fibromyalgia. So that's that. Waiting to hear further.
Not in a good place at the moment as some of the aches apparently are stress related and it's hard not to stress. If I don't work out, I'll get weaker and prone to more illness but working out makes this worse, so I'm in no mans land currently.
Work wise, I'm stumped. Being half deaf with vertigo and with fibro really has limited what I can do. I am currently in the process of somehow setting myself up to work from home with my own business that doesn't involve me doing what I used to do, which frankly I loved. Being able to get up, jump in the car and drive to different locations working on projects was quite fulfilling.
Pain wise, I'm actually only on CBD. Haven't gotten any further as of yet with anything from the GP bar a Body Reprogramming pdf.
I'm keen to hear from others if anyone else, including OP, on how you've managed yourselves.
Replied to the wrong poster in my comment above.I can't get to sleep. When I eventually do get to sleep, I can't wake up. It doesn't help that I'm partially deaf as well. So every morning my vestibular system is mashed. Sometimes it'll take me literally hours to get out of bed and able to at least eat. I'll have a full ache in my body but worse in my face/head/neck and shoulders, halfway from forearms to hands and shins to feet.
Completely hampers me. But when a little warmed up and able to get on with my day. I Still ache but I just get on with it. But when I'm able, by which time, it's coming to the end of everyone else's normal day.
I actually really dislike this. I'm coming up to 40 and up until a few years ago was fine. They diagnosed me with Menieres disease for the last 5 years and I was on medication for that. Recently taken me off the Betahistine Dehydrochloride (which was an event in itself with fluctuating hearing). Then the beginning of this year said they definitely think it's Fibromyalgia. So that's that. Waiting to hear further.
Not in a good place at the moment as some of the aches apparently are stress related and it's hard not to stress. If I don't work out, I'll get weaker and prone to more illness but working out makes this worse, so I'm in no mans land currently.
Work wise, I'm stumped. Being half deaf with vertigo and with fibro really has limited what I can do. I am currently in the process of somehow setting myself up to work from home with my own business that doesn't involve me doing what I used to do, which frankly I loved. Being able to get up, jump in the car and drive to different locations working on projects was quite fulfilling.
Pain wise, I'm actually only on CBD. Haven't gotten any further as of yet with anything from the GP bar a Body Reprogramming pdf.
I'm keen to hear from others if anyone else, including OP, on how you've managed yourselves.
Edited by TotalControl on Saturday 10th February 00:42
As per other suggestions above. I have taken cannabis-derived edibles and drops to ease chronic joint and muscle pain over many years, and it really helped me. There were others on a forum I frequented who were diagnosed with fm who found the same. I would recommend exploring this option as I found myself that conventional medicine often doesn’t help.
I find it sickening that cannabis-related products aren’t mainstream and readily available, as they’re proven to work time and again. Big pharma have clearly got too much lose but at what cost to our actual health.
I find it sickening that cannabis-related products aren’t mainstream and readily available, as they’re proven to work time and again. Big pharma have clearly got too much lose but at what cost to our actual health.
the-norseman said:
Just checking in to read the thread as my partner who is 35 has fibro and really struggles with it, I've seen a decline in her over the last 5 years as well.
No one told me this was a progressive illness and over the 15 years I have gone from just feeling stiff in the mornings to being largely housebound, unable to do anything I used to enjoy, my classic car has not moved for around 4 years and seriously life has no quality to it anymore. That all sounds woe is me and it's not meant that way but I've gone from doing a very hands on job and being a single parent to two very young children to basically my youngest now 18 is bordering on a carer for me and that is no life for him. I want him to move out and be in charge of his own life and not always feel like he cannot do what he wants because he has to be there for me.
Following my first post I have been referred to the pain clinic at my local hospital and that started with a two hour group teams session about CBT and other forms of self help. That is not the type of help I need. I am suffering muscle wastage as I am in so much pain and really need to do physio but any activity over a basic level not only leaves me wiped out afterwards but in so much pain at night that sleep is impossible. next step is a one to one but the wait list for that is a minimum of 6 months!
Meanwhile I have tried to renew my Blue Badge and because I am not under a consultant for Fibro I have been told yet again I need to have an assessment. I seriously hope it is somewhere that I can park right outside as my walking limit is around 40ft these days before I cannot walk anymore.
My sympathies op, I’m in kind of the same boat after a life changing injury. I'm stubbornly refusing anything stronger than 15/500 codeine for now and have been taking legal cannabis through a private clinic as above and it’s been fantastic (especially at night for sleep.)
I have to pay for mine (approx 200pm) but it’s worth every penny and it is available for free in some circumstances. All you need is proof from your Dr that you have tried other alternatives.
I can function normally and was hesitant as I don’t like being “stoned” but the clinic prescribed low THC and it’s actually relaxing if anything.
There’s help out there but you have to fight.
Best of luck!
I have to pay for mine (approx 200pm) but it’s worth every penny and it is available for free in some circumstances. All you need is proof from your Dr that you have tried other alternatives.
I can function normally and was hesitant as I don’t like being “stoned” but the clinic prescribed low THC and it’s actually relaxing if anything.
There’s help out there but you have to fight.
Best of luck!
OP, hoping you find something to make it better soon. Although I'm not in the position you're in, I do get a glimpse of it now and then.
I find CBD bud helps and doesn't get you high at all. Just calms the muscles. Much better for sleep but still not there. I've been taking some melatonin too to try and regulate sleep but that's a bit in the air also. When I don't take it, it does take me far longer to nod off.
Really, this whole fiasco for me kicked off about 14 years ago after I had an accident at work. Can't prove it was 100% from that though as almost a decade and a half is a long time and many other issues have cropped up along the way.
My wait for MSK/Rheumatology is almost 4 months. Pain management is a year. A whole year.
I have noticed that I'm quick to be discharged from MSK and Rheumatology (from 2019 and this year) but I've never actually asked them to even though they e put down that I don't want to continue on with treatment. Bizarre.
I find CBD bud helps and doesn't get you high at all. Just calms the muscles. Much better for sleep but still not there. I've been taking some melatonin too to try and regulate sleep but that's a bit in the air also. When I don't take it, it does take me far longer to nod off.
Really, this whole fiasco for me kicked off about 14 years ago after I had an accident at work. Can't prove it was 100% from that though as almost a decade and a half is a long time and many other issues have cropped up along the way.
My wait for MSK/Rheumatology is almost 4 months. Pain management is a year. A whole year.
I have noticed that I'm quick to be discharged from MSK and Rheumatology (from 2019 and this year) but I've never actually asked them to even though they e put down that I don't want to continue on with treatment. Bizarre.
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