Neurologist update and gaviscon

[e365]

Just a quick update. I met with the private neurologist and she was very perplexed. She did a very thorough physical examination and said I was neurologically normal- meaning no loss of balance, sensations, numbness, etc. She said the symptoms I have are similar to small fiber neuropathy but the examination ruled that out. She said restless leg syndrome doesn't present as burning but I found this link that says there might be a sub variant of rls:

pubmed.ncbi.nlm.nih.gov/251...

Anyway, the specialist that was very expensive was no help and recommended I find a pain clinic.

On another interesting note: I have had worsening of my symptoms since this summer. The pain has been very up and down. Saturday night was so severe I didn't know what to do. I had break through pain both burning and a bubbly type feeling in my hands and legs- much worse than normal. My limbs felt on fire. It's horrible. As a last resort I took a benzo (forgot the name) I got from my dr to use in these kind of situations and finally fell asleep.

I have had very bad reflux since this summer due to it being summer and eating whatever I want while socialising (like gluten). I have been eating gaviscon like candy all day but especially in the evening and before bed. I take my pregabalin 300mg at 8:30pm. I had read that gaviscon doesn't interact with pregabalin but started to become suspicious that maybe it blocks absorption. I switched to a low fat diet, no gluten (I'm gluten intolerant) on Sunday to try and get ahold of my reflux and stop taking the gaviscon. Since then I haven't taken one gaviscon and my pain has been so much more tolerable. Just an observation on my part but something to consider.

[grassgree]

I had that reaction as well. The doc said to take 400 mgs of magnesium at night to help with sleep, and I took gabapentin at the same time. A few months later I told the doc that gabapentin wasn't working and he stopped the prescription. Months later I went to a different doc, started gabapentin again and coincidentally had stopped taking magnesium. This time, the gabapentin worked, and at a lower dose than before. I didn't make the connection until I bothered to read the insert that comes with every prescription. If you take antacids or any other source of magnesium, space them at least two hours away from gabapentin.

[e365 in reply to grassgree]

Hi, I knew the reaction between Gabapentin and magnesium/antacids but supposedly gaviscon should be safe with pregabalin. I’ve even seen it written here on this forum. I was just surprised that it’s not ok to combine those two. At least in my case it’s not.

[grassgree in reply to e365]

I think the difference is that prescription meds for gastritis (PPOs) work all day long, whereas over-the-counter antacids such as Gaviscon don't stick around that long. Pregabalin comes with the same warning as gabapentin, to space them two hours or more apart.

[ChrisColumbus]

While RLS is generally characterised as an overwhelming urge to move the legs and an uncomfortable sensation in the legs (and sometimes in arms and other areas) symptoms described by the NHS here include:

"tingling, burning, itching or throbbing

a "creepy-crawly" feeling

feeling like fizzy water is inside the blood vessels in the legs

a painful cramping sensation in the legs, particularly in the calves"

The question is whether people reporting these burning and other symptoms have been correctly diagnosed.

Since you've been reading material on UK, US and Swedish sites you've probably come across the IRLSSG diagnostic criteria:

rls-uk.org/symptoms-diagnosis

Do your symptoms fit all of these criteria?

[e365 in reply to ChrisColumbus]

I pretty much answered yes to all of the questions in the link. I’ll print the test and take it. I discovered I’m unconsciously rubbing my feet together in bed and “stretch” my ankles by rolling them if that makes sense. Often when I’m sitting I fidget in some way by moving my feet or arms. I have been finally referred to a pain specialist but the wait time is 5-6 months. Hopefully I’ll just get help with medication.

[ChrisColumbus in reply to e365]

Hope so - good luck!

[ChrisColumbus]

I know that it has been suggested that your problem may be paresthesia rather than RLS. If your symptoms don't match the IRLSSG criteria linked in my earlier Reply, you might like to check out the following if you haven't already done so:

my.clevelandclinic.org/heal...

[e365 in reply to ChrisColumbus]

I’m not sure that describes me as my pain is mainly at night and relieved by movement. And it occurs on both sides of my body.

[ChrisColumbus in reply to e365]

As it warns in the Cleveland Clinic piece more serious forms of paresthesia can affect both sides of the body, and if it is caused by e.g. a circulation issue movement can relieve it. The fact that the symptoms are mostly at night could indicate that your problem is more akin to RLS. But on the other hand many conditions seem worse at night as one is desperate to sleep and there are few other distractions. I hope that taking the gaviscon 2-3 hours away from the pregabalin may help!

[Simkin]

I have never ever had pain with RLS.Just nerves which drive you insane.

[e365 in reply to Simkin]

It’s a horrible disease

[Fingerandus in reply to Simkin]

hi i guess not everyone has pain my restless legs are very painful, my body arches to stretch my legs it can be either side my leg gets contractions squeezed so hard then i move it to a different place or if im in my chair get up and walk or do something and the pain of RLS goes away until i relax again,i get it every nite without fail as soon as i sit down and rest. i have taken half of my dose of pramipexole tonite i expect to stay up all night, my feet at the moment are on fire ,i will go soak them in cold water !

[Simkin in reply to Fingerandus]

Oh gosh. Poor you.

[Fingerandus in reply to Simkin]

hi Simkin yes im here 3.36 am still with jumping legs as i call them hubby snoring away oblivious to my nightly terrors doc gave me a script for carbamazepine the side effects are horrendous.even she was worried id rather have RLS xx bless you

[e365 in reply to Fingerandus]

I’m really sorry you’re suffering so badly. It’s a horrible disease. Are you still on pregabalin? Even though it doesn’t stop the pain it helps me eventually fall asleep.

[Fingerandus in reply to e365]

hi i do have lots of lyrica but they make my feet swell until i cant walk it takes a week off of them for the swelling to go and i dont know if the side effects will go away in 3 weeks if i keep taking them ..

[e365 in reply to Fingerandus]

Oh yeah… my hands are very swollen in the mornings. Pretty sure it’s the pregabalin but dr wasn’t concerned.

[Fingerandus in reply to e365]

Lyrica does affect kidneys and should be given with care to older people with kidney problems like me 😒😂

[Simkin]

It certainly is.

[Grammieof4]

separate the gaviscon from the pregablin by 3 hours. I have to do that with my Gabapentin and magnesium

[e365 in reply to Grammieof4]

Thanks. Just trying to avoid any gaviscon now by really watching my diet to see if it makes a difference. So far so good.