Merrygoround

[AnnaVic]

Is it just me? About 2 months ago I visited GP with pain in my feet and ankles. It feels like hot lead boots. This is in addition to restless legs but sometimes the pain takes over from the jumping and it all ache. I showed him the nodules on my toe joints and asked about arthritis. He said yes it was RA but offered no help. I went back again and asked about treatment. He arranged blood tests which came back negative for RA and receptionist said no further action required. Walking is uncomfortable and the pain from early evening makes me very irritable. 3 week wait for another appointment, this GP says neuropathy and has given me amytriptiline. I told her about reading on the website that it was not advised. Was told she would like me to try it anyway as it was tiny amount 10mg. Legs went mad in the early hours last night!!! I have fought so hard to get the rls down to bearable that I'm angry at her knowall attitude. I wasnt expecting the rls to kick off after only I small tab so it wasnt my imagination. I dont know if there is a treatment for rls and peripheral neuropathy together. Will keep reading. 🤔

[Hidden]

Yes, my feet are very painful and have fluid. One foot is 25cms and the other is 28cms, measured around the instep. (/something I decided to do myself as the difference is noticeable. Guess the doc won't know why. Will have to research on my own as usual. Thank goodness for all of you. Janet

[funnyfennel]

Interesting that you have nodules on your feet as so do I. Some are on my toe joints and some along the tendons under the arch amongst others. I wear thick socks and very cushioned shoes so mostly they are not painful, but worrying...I thought that they were a form of "Duprytrens" which usually occurs in the hands and my father had it. Did not think that it was associated with my RLS. Am planning to go to a consultant in the future.

[beady3]

sorry you are in trouble it does sound like my daughters problem she has M E also nerve ending probs that why she has amytriptiline but they say that is one of the worst tabs for rls. I am on Tramodol and it's working excelant for me. A doctors job is to help people so stick your guns and go back its you that is suffering not them good luck x

[Hidden]

Hi, I take Tramadol and Gabapentin for peripheral neuropathy (PN) and these meds especially Tramadol are also used for RLS with success in a lot of people. You could possible have relief from both conditions from the same meds.

Your GP is ill educated and arrogant in not listening to you.

There is a route of treatment for PN to find what is the lowest dosage they can give you that will alleviate your symptoms (which makes sense).

Firstly, there are a group of drugs that work on reducing nerve pain.

1.Amitryptilline or

2.Gabapentin or

3.Lyrica

Secondly, a painkiller, often 1.Tramadol or a 2.Codeine/Paracetamol mix.

Stronger opiates can be given if needed.

So your GP is just following the guidelines blindly and didn't listen to you and your genuine concerns. Amitryptilline is a no no for many with RLS (me included)

Your GP is a moron.

Is there another Doctor in your practice that you can see instead ?

There is a website that I can't do the link for that I'm sure one of the others on here will do for you ( please ) that lists all the good and bad meds for RLS and also a page for professionals re RLS and what they should and should not prescribe. Print out these pages and take them with you for your next appointment.

My PN is just about under control with the meds I take, these are things that also help me.

My feet and lower legs get very hot, so I keep them as cool as possible by using a cold filled water bottle under them or keeping a fan on them.

Try not to be on your feet for long stretches at a time, try to have frequent sit downs with your feet up. I know this isn't always possible but do try to follow when you can.

If I've been on my feet for too long and the pain starts to becomes to unbearable or I start to lose the feeling in them I lie down on my front as much as I can until it eases up.

When sitting I always keep my feet up.

It's trial and error to find what helps. It took me awhile to accept that to have as goodish a quality of life as possible that I had to accept that there would be many limitations to what I could and couldn't do anymore. It's a balancing act lol.

Just one last thing, did your GP test why you have neuropathy ?

Blood tests ? CT or MRI scans ?

There are several types of neuropathy and several causes, a main one being diabetes.

Mine is from a severe spinal injury leading to nerve damage and hence the neuropathy.

I wish you all the best, I hope you get the appropriate help soon

[Pippins2 in reply to Hidden]

Excellent reply Booklover!

[nightdancer]

Amitriptyline is a tricyclic antidepressant and is well known to make RLS worse, also used for prevention of migraines, but not in people with RLS ever, should it be used. Like AnnaVic said, it made her legs go wild the first night. Gabapentin is used for nerve pain and also RLS. it could be something for you to try, but I do not like your doctor either. THEY work for US. A good place to look meds up for "Drugs to Avoid" is on the RLS-UK web site or rlshhelp.org on the treatment page. Are you in the US or the UK or elsewhere? Meds have different names in many countries.

[Windwalker]

Merrygoround,

I am in total sympathy with you. I have the same thing you do and it has prevailed for 40 years. I now take the maximum doses of Gabapentin ad the maximum dose of Ropinirole. I sometimes sit in a recliner and shiver most of a night and other times the medicine works and I can sleep three or four hours in a row.

I wish you could find an answer because if you did then I could find a solution.

The drug company ENDO has a medicine they will market next year that is a time released formula called Belbuca. It was developed for Fibromyalgia and may be helpful for RLS, since they seem to go hand and hand. Keep an eye out for its release in the UK and here in the former colony.

Windwalker

[AnnaVic]

Thank you all for your kind replies. The support and information on this site is invaluable. I hate being a killjoy at home not wanting to go out in the evening, preferring to stay at home and nurse my feet and ankles. Maybe if I could have a couple of glasses of wine, which I cant, I would feel more like socialising. It is only people who suffer from rls who understand you are not exaggerating the discomfort and being a wimp. Anyway, thanks again.