I've been having pains throughout my body, especially in my right arm, both hands and fingers, both shins, feet and toes. These pains come on at any time like piercing shooting pains, when the pain lapses it will appear in other places. It lasts maybe ten minutes upto a couple of hours. This pain is off the scales and can reduce to tears. I'm on Gabapentin and my dose is 2700mg a day and have been on them for about 4 months. It has helped and not getting as many piecing pains as before. I'm under a rheumatologist who's thinks it's inflammatory, have had many rest. They are saying I may get referred to a neurologist. Has anyone else had symptoms like this.
Gabapentin : I've been having pains... - Restless Legs Syn...
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Olliechopps
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Hello,
Your symptoms sound very unpleasant but also not like RLS symptoms. A neurology referral sounds like a good idea.
Hope you find some help.
Gosh this really does sound horrendous. I'm so sorry. I wonder how you're managing to cope?
The rheumatologist does sound a bit woolly! I presume this means that blood tests haven't detected any inflammatory markers.
If the pains are due to any neuropathy, then gabapentin may help, since it is used particularly for nerve pain.
Seeing a neurologist may help in detecting any neuropathy. This may not be straightforward as you experience the pain in many sites, upper as well as lower body.
I do hope you get to see a neurologist soon!
The good news, at least, is that this isn't RLS.
I have had symptoms like this but that's because I have MS as well as RLS. The stabbing pains are caused by scarring in my brain and spinal cord.It sounds like nerve pain/neuropathy and a referral to a neurologist sounds very sensible.
When did these sharp pains start? You haven't had Covid by any chance?
I hope you get to see a neurologist to find out what's happening.
Amitriptyline is good for stabbing nerve pain. I used to take it before I developed RLS. However, it makes RLS much worse so I can no longer take it.
Cannabis is very good for nerve pain and it's now available in the UK legally.
If the gabapentin doesn't help the pain, Cannabis might be an option.
It all started, when I was really unwell for over three week's last march. I started feeling pains in my right arm last April 2020 and couldn't grip anything or lift heavy items ie a filled kettle or pulling things. As time went on the pains started moving to other places. By the Christmas time, I had to stop working as the pain was travelling around different parts of the body. I'm a bus driver, so thats why I had to stop as the pains where off the scales. We are now in August and I'm still not working, which so frustrating. Throughout this time I've been on steroids on and off as well. I was referred to a Rheumatologist, who kept taking all sorts of bloods, all coming back negative. They thought I may of had seronegative inflammatory arthritis, but that was ruled out. Also thought I had psoriasis, which causes inflammatory through the body.February I was prescribed Gabapentin.
My blood for myositis specific antibody showed anti Mi 2 beta tested positive. Apparently this type of antibody is associated with clasic features of Dermatomyositis.
I've had EMG/nerve conduction studies, which came back negative, so now am waiting for an MRI scan. I was told if this is negative I would be referred to a neurologist. So this is where I am now.
Oh also, I did ask many times to be checked to see if I had Covid, but the hospital and my GP said there's more to it than Covid. As I've now both my Vaxine jabs apparently it's to late to see if there is or would have been any antibody in my blood stream.
Interesting that you were really unwell for 3 weeks & then the pains started. Viruses ( including covid) are the cause of so many diseases and affect the nervous system.I suspect the MRI won't show anything. Definitely see a neurologist and discuss post viral pain. Fibromyalgia is linked to viral infection.
Do consider medical cannabis as it's the best thing for severe nerve pain. I've had trigeminal and occipital neuralgua and the only thing that helped the excruciating pain was the cannabis.
You have to pay but it works out about £2-3 a day.
I have experienced something similar, though not nearly so severe. I can count on one hand the amount of times the pain made it difficult to stand or hold things. It’s most annoying when it wakes me from sleep or makes a limb jump or buckle. My pain, when it happens, is generally deep (at least it feels deep-I’ve guessed bone pain or minor muscles or tendons spasming but have no real idea what it is) and pulsing. And definitely migratory. I have had all the work ups. They initially suspected spine, then they thought MS, and now they are back to thinking it is from the spine-specifically cervical spine because my entire body (including scalp and face) have these weird symptoms.
I’m sorry the pain is so severe and it’s good you will be seeing a neurologist. I hope he/she is able to help more than mine has. I’ll be very curious to hear what you learn. Please keep us informed. I hope you figure out how to manage the problem soon. Hoping for the best for you…
My god you have been through it. I know where your coming from. For me I just want to know what I've got. Once I get diagnosed with something, then I can be treated correctly. It's the not knowing. I reckon if I don't get a diagnosed with anything, they probably will say I've got fibromyalgia, as I've herd many times this has happened.Yes I'll keep you inform of my outcome.
Take care of yourself.
The average dose of gabapentin for nerve pain is about 2700 so it's not 'overdose'.For RLS, the average dose is about 1800mg but some take 3000mg. However, there is an absorption issue at doses above 900 so pregabalin is often better as it's absorbed more easily and a lower dose suffices.
Yes, see a neurologist.
MRI first, then hopefully see a neurologist.
You may want to reconsider the order of events because the MRI they choose may change depending upon your overall symptomatology and the practitioner’s expertise. MRIs aren’t fun (especially for someone with RLS) and my GP made me get one on my spine then the neurologist had me get another MRI that included my brain and spine, with contrast. Just something to think about. Like you, I also feared a diagnosis of fibromyalgia if nothing else could be found, but they ruled it out very quickly.
Out of curiosity, when you have the pain, could you pinpoint where it is if someone was with you and asked? For example, if you happen to be having it in your right upper extremity (I realize it moves around but for the question, it’s in right arm), is it your whole arm that hurts? Or one specific part of your arm..and probably not even a joint? A place you could point to?
Yes I can tell you exactly where the pain is. When the shooting piercing pain starts, ie starts in elbow bone, then subsided and come on in knee cap. This as a for instance, but I can pin point right on the dot when the pain is. All I want it to do is go away.I had it this evening in my right elbow bone, then it came on in third and fourth right hand fingers.
Where as the bottom of both my feet, they are both like walking on very bruised feet, all the time.
When I've sat for a while, then try to get up, I can just about stand on them, I start walking and I'm like an old man. This happens every time. The worst time is in the morning when I get out of bed.
I also as of late, notice the my lower back, I've also had some issues. This has only started the last couple of weeks.
Jeez. That sounds terrible. So you believe these pains all have the same origin? I find intuition (especially about weird bodily things) meaningful, but I ask because your heel/foot pain which is worst in the morning or after being seated, sounds very much like plantar fasciitis. But now that I think about it, you have been seeing the doctor so I’m sure they would have considered that and ruled it out. And either way, you still have all the other symptoms. Our symptoms are definitely different as yours sound like a joint is frequently involved. Mine is never in a joint. The saving grace to inexplicable pain, in my opinion, is that I can look at whatever part or me feels like it is in a vice and see that all is well, even if it doesn’t feel that way. It’s confusing, but also reassuring. Thank you for answering my questions. I really hope the neurologist can sort things out. I’ll be thinking of you and looking forward to hearing what you learn. Take care in the meantime.
You are right my consultant has ruled a lotof thing out. Seronegative Inflammatory Arthritis, psoriasis, which can cause serious Inflammatory. I've not got aosterthritis or rheumatoid arthritis. I've had EMG/nerve conductive study, as I've had pins & needles with some numbness. I got tested positive on the antibodies of myositis, which is a rear muscle issue. I'm now waiting for an MRI scan to see if the can rule out Dermatomyositis which is in the same group of myositis. I personally don't think I have. I really think I need to see a neurologist. I even paid private to see a Physiotherapists, to see if I could have acupuncture for the pain. He said my muscularskelitor is fine and that I need to see a neurologist.Good luck in getting treated yourself.
I agree with you because of the absorption issues above 900mg but many on here seem to need higher amounts. It's a high dose but I think 'overdose' is perhaps the wrong term.
HiThe maximum dosage of Gabapentin is 3600mg per day. As my dose was increased, I'm now feeling some side effects. Definitely feeling more tired than before especially when I was on 2400mg. I'm having problems in remembering thing. Also when I'm talking I can't get my words out, i know exactly what I want to say, but can't get the word/words out. So frustrating. I've also loosing my balance and walking into thing.
I've today been given the ok by the docs to reduce my dosage, 100mg every three days.
in reply to Olliechopps
The official UK max for RLS is 2700mg.
If you live in the UK see this link
cks.nice.org.uk/topics/rest...
The UK max dose for nerve pain or epilepsy is 1.6g 3 times a day.
bnf.nice.org.uk/drug/gabape...
Hence reassuredly neither 2700mg or even 3.6g is an overdose.
Some further information, I've recently discovered, might put futher light on your issue.
One is that RLS has been found to be associated with musculo skeletal pain (neuromuscular), so the two may have a common cause.
Two, is that severe RLS is associated with increased "somatisation". That is the occurrence of physical symptoms in the absence of any physical cause. The most common symptom is pain.
It does seem possible then that your pain is part and parcel of your RLS.
Still good that you should see a neurologist to eliminate other possibilites.
It may be however that more effective treatment of RLS will help with the pains.
Gabapentin doesn't appear to be that effective for you. Switching to pregabalin may help. The dose of pregabalin equivalent to 2700mg is 450mg. This is the UK max dose for RLS.
SueJohnson in reply to
You mention that in your research you found " RLS has been found to be associated with musculo skeletal pain (neuromuscular), so the two may have a common cause." Since I have muscle pain in my thighs and sometimes my calves that started when my RLS got worse I would be interested in where you found this.
in reply to SueJohnson
In this case it wasn't me that found it. However, here's the link
bmcmusculoskeletdisord.biom...
I recently found something else you might be interested in.
This study found that the more severe RLS the more "somatisation" there may be.
Somatisation means experiencing physical symptoms when there are no physical causes for the symptoms.
here's a link
Just a long shot, you you mentioned you have thigh pains. My MRI Scan I'm having, they want to determine whether they can rule out Dermatomyositis. The MRI scan is being done on my both my thighs. It's to do with antibodies.
It's a rare muscle condition. I would get this checked out, or look this up. Being at It's worse you could end up in a wheel chair. If your not seeing a doctor, I suggest you do. You should be referred to a Rheumatologist, like I'm seeing.
2700mg is the recommended UK maximum for RLS. (National Institute for Health and Care Excellence) Hlgher doses may be used for nerve pain or epilepsy. In such however the dose is split.
As Jools says the absorption property of gabapentin is inconsistent and taking more than about 1200mg is probably pointless. Any extra taken isn't extra absorbed.
The other factor of course is that the higher the dose, the more side effects and the greater the risks.
Hello again.
Having further read your thread and the comments made. I am reminded of a similar experience I had in the early 1990s.
I also went through investigations including antibody tests. Nothing was ever found.
At that time, it was shortly after I was first told I kicked in my sleep. It was only decades later I realised this was PLMS. I've never until thought there might be any connection between the two
In my reading, I first came across a condition known as functional neurological disorder about a year ago.
Recently, I discovered the following study.
hqlo.biomedcentral.com/arti...
An interesting finding of this study is that there is an association between RLS and "somatoform disorder" or "somatisation". Previously this has also been found to be associated with anxiety disorders.
Here is a simple description of this
webmd.com/mental-health/som...
This, I post purely for your information. I make no judgement about this or about you.
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