Agony 😓

[Annimay43]

Legs have been in pain for weeks now and cant even sleep let alone walk. I was on pramipexole years ago but my Dr stopped them over year ago cant remember why. Can someone please tell me is there better medication? Im also on iron tablets as iron low

[Madlegs1]

What is your serum ferritin number. Should be about 100 to avoid rls_-- if that's your problem.

Also, what other medications are you on? Antihistamines and Ssri's are no nos.

Also consider triggers that may be setting you off. Alcohol, high sugar, high salt, rising agents- biscuits etc. Loads more - keep a food diary.

Read up the last few weeks posts on this site.

Check out

rlshelp.org

for more info.

[Annimay43 in reply to Madlegs1]

Hi not sure what serum number is never been told anything about it im on cetrizine antihistmaines. What are SSRIS? I will try keep diary thanks and avoid loads sugar etc

[Parminter in reply to Annimay43]

Ferritin is the molecule that stores iron in the body. It is not normally tested for, but it is crucial for RLS sufferers.

If it is below 75, or even 100, you need supplemental iron, under your doctor's care. If it is below 50 you may need an IV iron infusion.

Iron is crucial for the proper functioning of the brain, and we cannot store it in the place we need it most.

So you have to watch it carefully and keep replenishing it.

We have what is called 'iron deficiency without anaemia'.

It can make the difference between night and day.

It is a miracle for many.

SSRIs are anti-depressants, they are not good for us, however miserable we feel. They make RLS worse.

[Annimay43 in reply to Parminter]

Thank u tht explains alot ive very low iron at minute and on galfer for it. So do u think thts making me RLS bad?

[Parminter in reply to Annimay43]

Animay, explain what galfer is?

Whatever it is, low iron is very bad for us, so please see your doctor.

I am going to attach an academic paper that you can print out and take to your doctor, as he/she may not know about the necessity for us to keep our brain-iron levels high.

sleep-journal.com/article/S...

[LotteM in reply to Parminter]

There is also very good info on the role of iron in rls on the Johns Hopkins website : hopkinsmedicine.org/neurolo...

[Parminter]

How much pramipexole, for how long?

Did you stop cold turkey? Or taper?

For how long have you been suffering like this?

Has the pramipexole been replaced with anything else?

If so, was it a complete change-over or did you piggy-back the two drugs?

[Annimay43 in reply to Parminter]

Hi was on 2 twice a night for well over a year. My own dr stopped them. Been suffering for years with Rls but this past week or two its been worse not been prescribed anything else to replace it

[Lynn9910 in reply to Annimay43]

Hot weather makes mine worse and I take pramipexole, but have found taking 375mg magnesium tablet daily has really helped .. it’s not an instant fix as it has to build up in system. good luck x

[Parminter in reply to Annimay43]

If you came off pramipexole suddenly you may have DAWS. (Dopamine agonist withdrawal syndrome).

One year is not long, but anything is possible with that drug.

The symptoms of DAWS may include anxiety, panic attacks, depression, agitation, irritability, fatigue, orthostatic hypotension, nausea, and generalized pain. Amongst many others.

So if you became miserable and experienced pain soon after coming off, and if your RLS symptoms have worsened, you need to see your doctor or a neurologist.

RLS does slowly become worse over time, but a sudden worsening is something else.

As suggested above, check your ferritin level first, that is crucial.

THere is no reason for you to suffer so much. If your doctor will not listen, find another one.

[nightdancer]

Iron/Ferritin is not the problem for everyone. Ask your doctor why he took you off the med last year. There are many classes of meds, as you look thru these posts, that help. No one thing works for everyone, that is for sure. Are you in the US or the UK, or where? You can go to the RLS-UK Foundation went site. this is the form for the FOUNDATION. Or, in the US , the RLS FOUNDATION is rls.org. John's Hopkins web site has a section for the RLS Quality Care Center. Do not look at web sites that promise you a cure. There certainly is not cure and they are scammers.

[involuntarydancer]

It could be the anti-histamines that are exacerbating it. I would try stopping them to see if things improve. Also have a look through this site for recommendations of things that have helped others - they are many and varied (I just saw a recommendation for drinking wheat germ). Many find help with magnesium supplements. Drinking water is recommended as is emptying the bladder. There are many other suggestions. Raising iron levels (if they are low) is often very helpful so keep taking the Galfer - or you could switch to gentle iron (iron bisglycinate) which many people on here like. It can be got in Holland and Barrett. Iron should optimally be taken on an empty stomach and with vitamin c so take with orange juice (unless using iron bisglycinate which doesn’t require the vit c).

[rsears57]

I'm surprised your rls or presumed rls makes your legs hurt when you walk. That is usually the only relief from it. You might check with your doctor on your liver or kidneys. My friends legs hurt too and I know hers is from one or the other, just cant remember which.

[Hidden]

You aren’t taking any herbs (ex. valerian root, turmeric), are you? I tried turmeric once, but had to stop it only after 3 days because I got pain so bad that it REALLY hurt to walk (I would get tears in my eyes with every step).

I tried a natural sleep aid later on that had valerian root in it. Since I started having the same reaction right away, I attributed it to the root and stoped taking it.

I use magnesium spray for pain now and it really helps!

Also, I’m assuming it’s hot wherever you are. I don’t know about you, but my legs get painful when it’s hot out.

Does cold massage help (dunking your legs in cold water)?

[Annimay43 in reply to Hidden]

Hi no I dont take herbs for it. I tried a cold flannel on it the other night it helped a bit. Yes ive found the hot weather makes it worse. Im going to buy magnesium tablets or spray c if it helps