Is this just me ?

Hi Everyone , not posted for very long time . Have had a number of things going on ,not least my father has had quadruple bypass and pacemaker fitted , and the 3 months they told him it would take to get back on his feet has been nearly 3 yrs , although this hasn't been helped by the diagnosis of lung cancer although he's been told it's not actually causing him a problem at the moment he's in a pretty bad way . Also my partner of 25yrs is suffering terribly with depression (work related) and at times I've been afraid to leave him on his own for fear of what he may do . So as far as my RLS goes its had to take a bit of a back seat ( working 24hrs a wk also) . Lost count of the different doctors I've seen , blood tests I've had , research Ive done . Anyway just came back from having ECG as I've been experiencing what I think are palpitations but when you feel like your heart is jumping right out of your chest it's quite scary , result was 'not 100% but nothing of concern ' nurses words . The previous week latest blood tests came back 'normal' although ferritin level was only 25 which I had to request once I explained to latest doctor the 'normal' isn't ok for us RLSers , and he's asked me to show him the clinical information that states this ( I believe it should be at least 75 for us) . The previous doctor asked me no questions performed no tests , just prescribed pramipexol , no advice, and commented as I was leaving if all her patients are as well as me she was in for a good day , I don't need to tell you how that feels but like an idiot I just laughed n bit my tongue . That was March this year and I've been putting off trying them because I feel I need to have a free week at least when I start them because there's a good chance I will react badly to them , and between driving my father to different appointments and therapy etc and my partner , working and life going on not really been an appropriate time . Also I read somewhere on here that pramipexol should not be given until your ferritin levels are good , and maybe some issues regarding heart health.

My RLS seems to be progressing in that I have had pains for maybe 2 yrs now but they are getting worse to the point that I can't go to work at times because I can't bear to sit , shooting pains in left thigh like deep in muscle , gnawing ache in left ankle , shooting pains in left foot/heel/toes , shooting pains in left shin/calf , constant tightness/ knotted muscle feeling in left leg , feeling of soreness back of knee but not to the touch , pains in knees , knees giving way , heaviness in legs (morning mainly) . My right leg occasionally feels the same but maybe once/twice a week . My arms and wrist seem to be starting to imitate this also . Also terrible cramps in legs/feet and appear to be getting spasms in areas such as bottom of rib cage , bicep , forearm , just below shoulder , hand and few others . Also people have commented they think I may have ranauds because my middle finger right hand goes numb and white for about 5/10 mins occasionly . Doctor said the 'cramps ' were part of the RLS , which doesn't seem right somehow . I'm extremely tired most days , think I must wake at least 20/30 times a night . Not been diagnosed with PLMS but partner, friends and siblings have always said I'm an 'aggressive sleeper' and always kicking .

I'm beginning to think that my RLS is masking another problem but it's all being blamed on the RLS . I guess I'm asking everyone if their RLS is like this , I do get have the irresistible urge to get up and move around , have done for at 10 yrs I guess , find it very difficult to sit or stand still , had terrible time last time I had flu , took the usual cold n flu remedies and boy did my legs go into overtime , thanks to this site some weeks later I read that anti-histamines can aggravate RLS as well as the other things to avoid .

Any comments would be really appreciated , will be seeing doc again in few wks and want to be best prepared .

Jayne

4 Replies

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  • Hi Jaynee

    I am sure others will be along shortly to help you but in the meantime, on the RLS-UK website there is a section entitled For Professionals. In that section there is a video called Iron and RLS.

    rls-uk.org/#!treatment-for-...

    Perhaps your doctor should take the time to listen to it and also peruse the For Professionals link too:

    rls-uk.org/#!for-profession...

    You most certainly have been tested/are being tested with all that is going on with you and in your life with loved ones. I am sorry.

    Kaarina

  • Hi Kaarina, thanks for the link , another to add to my list . My current doctor did give me the impression he's more interested , so fingers crossed .

  • Hi Jaynee, let us hope so. If your doctor is interested in RLS he may well welcome you mentioning the RLS-US website to him. It is one way of promoting awareness of RLS and it is doctors we wish to "educate". The website was recently revamped in March of this year.

    Kaarina

  • My doc here in California wants my ferritin over 100 and my RLS calms down when I keep it there with iron supplements taken with vitamin C and ground flax and plenty of water. Also I find walking at least 30 minutes a day and stretching before bed helps. Maintain overall health is very important. Watch hour video posted by Dr Greger at nutritionfacts.org for latest research on staying healthy and why most docs will never provide you with this info. All fact based info from latest research.

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