Parkinson Progression With Restless Leg Syndrome
Apr 17, 2015
Started with a tremor in my hand last year saw a general neuro who thought its maybe related to chronic pain i suffer and to keep eye on it be re referred if it changes now it's gone to my arms and legs my balance is poor keep falling over my muscles are stiff as a board i get tremors after using my muscles say even drying my hair and also i keep stiffening up so bad my body just wants to stretch itself out from head to toe worse during the night i have also started with restless leg syndrome i'm also getting confused and forgetful has anyone else experienced parkinsons onset like this i'm wondering wether to be referred back to a movement disorder specialist?
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I've been Diagnosed with Parkinson's Disease for 14 years.. im currently on apomorphine subcutaneous .. over the past year i've been noticing im getting terrible episodes of shortness of breath, breathing is really difficult .
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I was diagnosed having Parkinson's Disease in 2002, but symptoms began in 2000. I worked as a Senior Environmental Health Technician at the time, when I was diagnosed, I was so ashamed of myself, apart from my husband and children I did not tell anyone, I carried on working as normal but didn't tell my employers, in 2004 my condition became worse, one morning I woke up and could not walk at all. after being off sick I was referred to occupational health, who recommended early retirement. so I lost my job for sometime I was sad not depressed,, my mobility is impaired quite badly and I lose 50% of the day due to off periods, i.e. when I am unable to walk or function normally.
so I took up hobbies such as painting, embroidery, mosaics, crosswords etc to keep me occupied during my off periods.
My conditions is steadily worsening, I try to find out new treatments or complementary therapy,
I have not given up yet, I had a go at acupuncture, massage, physio and hydrotherapy, chinese massage, chiropractic, osteopathy, homeopathy, acupressure
I attended a pain management course, and recently has a thai yoga massage, the future looks grim and it worries me but I shall fight this disease till end
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I was diagnosed with Sjogren's about 13 years ago and I am now 53. Initially the dry eyes/mouth was a real problems but have learned to control moisture pretty much by medication and self-help (I prefer the self-help but appreciate medical help occasionally). 5 years ago I had Non-Hodgkins lymphoma which presented as a lump in the roof of my mouth (successfully treated with radiotherapy which also slightly improved my saliva production). Now all-clear. Since November 07 I have had numbness in my feet and then March 08 very red swollen ankles/feet and red spotty rashes (various locations). I was referred to the rheumatologist who has now diagnosed Vasculitis so I am on a 6 week steroid dose. Fingers crossed!! I just wanted people to 'be aware' that other symptoms could possibly occur and to be aware that they are connected to Sjogren's (I have been given very little useful info in 13 years!). As someone said before it's one thing having this but totally another trying to explain it to people. It is one of those 'unseen' medical problems which the sufferers have to deal with pretty much on their own. Except that we have forums!! Let's talk and discuss ideas, self-help. Keeping positive has got to be better than letting the symptoms 'get to us'. My main concern at the moment is how this may affect my full time employment - is this recognised as a disability here as it is in the United States?
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I was diagnosed with an extreme case of RLS and have been taking Requip along with Klonopin, I am up to 2 mg of Requip 3 times a day and it worked great for a while. It seems like it quit working, my legs hurt so bad I could cry, the weight of a blanket feels like a two ton weight on them, they feel like they on on fire, and and I haven't sleep for days. I just started taking gabapentin, I really don't like taking it because it makes me feel looney kind of like in a fog. Sometimes I break out into a cold sweat so bad that I am just dripping with sweat and feel like I need to lay down, and turn the fan on me. The sweats are beginning to be more often. I just don't know what else to do.....
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Has anyone ever had problems with lithium and restless leg syndrome? I can't keep them still. I have been back on lithium about 2 months
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I'm 28 years old and am about 4 months out of surgery for my herniated disc now and have had no issues since, recently ran out of the Pain meds they had me on (Norco 10-325). I was off work for 2 months and have been working at my automobile factory for 2 months without any issues. The past two days I have had severe restless legs, while getting up and walking around helps, it gets bad even while at work. I haven't been able to sleep and just feel plain discomfort. Like my back needs to be 'cracked' and severe pain also. I guess my question is, is this more than likely caused from my lack of pain meds or could it have been there since surgery and I haven't noticed because of the meds? Doctor cut me off them and said I need to find a new job, but I think it can be fixed or handled so I can at least be comfortable. Also on the mri that showed the herniation there was a bulging disc. Could that have herniated as well? I am also on celexa lisinopril and adderall ( which I haven't taken since getting on the narcotics except for the lisinopril ) any advice is helpful to find out more. Have an appointment with a new doctor on the 14th would like to know what to say. I know people abuse narcotics and I don't want my doctor to get the wrong impression.
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I've had RLS on and off for the last 10 years and have only recently started to notice that whenever I get up in the night with a bad case of it the veins in my lower legs are feet are extremely large and swollen, to the point that people who've seen them have even mentioned it.
One thing that 100% cures it for 20 minutes or so is having a freezing cold shower which constricts the veins so that they're not visible, and I get the opposite with hot baths, they drive my legs nuts and make my veins look huge and I have to get out almost straight away. The only other thing I've had luck with is raising my feet when I sleep by putting cushions under them. I was wondering whether this could suggest that it's being caused by poor circulation and that the need to move them is my body trying to get the blood flowing, and that maybe a drop of blood pressure at night causes it to pool in my legs, hence the large veins. I know dehydration also lowers blood pressure and when I down a few pints it also seems to give some relief. Does it sound likely that this is the cause for me, and if so what could I do to relieve it, I was thinking maybe some calve stockings?
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Does magnesium help? I need to be careful not to take anything with iron in due to my haemochromatosis.
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my doctor has prescribed me quinine tablets for my restless leg syndrome. Has anyone tried them? I have got symptoms tonight the first time in 2 weeks since starting the treatment. I'm not sure if they are working for me or not as I can go 2-3 weeks in between flare ups.
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My doctor would like to try me on Methadone and I have mixed feelings. I'm on a large dose of Ropinirole and it isn't helping me anymore. It's the only thing I haven't tried yet. RLS is ruining my life. It's now in my arms and legs.
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I’ve suffered RLS for 30-40 years now. I take Pramipexole. I offered to care for my daughter’s dog whilst she went on holiday. It’s a Pug about 2 feet tall. In the space of about 3-4 days, I must have walked that dog 10-15 miles. I was devastated when she wanted him back. Apparently he slept for 2 day’s. The following day I developed left sided hip Bursitis. The pain was excruciating. After 4 days of this pain, at 3 in the morning, I dialled 111. A doctor told me to take paracetamol. Around 10am later that day, I dialled 111 again and was referred to a primary care doctor who prescribed 30-500 co-codamol. Two day afterwards, the pain began to subside to a dull ache and 2 weeks later, no pain at all. Where’s all this going. Between the Bursitis pain starting and now, I have suffered hardly any RLS. Occasionally a little in the afternoons but that’s all. Apparently exercise helps to relieve RLS and I believe that is the case. However, I’m wondering if prolonged intense exercise gives more prolonged relief. Be aware of other conditions though. Particularly cardiac related. Discuss with your GP. I have reduced my Pramipexole from 4 tablets at 17.30 to 2. Still no RLS. The moral of the story. Buy yourself a dog and walk the hell out of it.
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Hello all and good wishes to all to find your cure for WED/RLS. Willis Ekbom Disease is really what this RLS is.
Anyways I started on .25 mg of requip then it was upped each week (cos it only worked for about 4 to 5 days) then up to 1 mg. of requip. Now it's horrendous and I rarely sleep. I found through research that Yes! they do use the benzos and gabapentin (neurontin), and opioids for WED/RLS. Last night I was at the end of my rope and used my ativan and low dosage of dilaudid and actually slept for 4 hours without interruption!! My doc doesn't understand and wants to try me now on Mirapex witch is another DA (dopamine agonist) and may or more than likely NOT work. It's a rough road, and I have done a lot of meds. I hope and Pray when I go to my doc next week I get some answers. As well he will NOT give me a ferritin test nor refer me to a neurologist.
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I'm curious, I'm still trying to determine whether I have RLS or just normal insomnia. Here are my questions if you would be so kind;
Are you waking up at totally random times at night or do you wake up at the same time every night?
How many times do you wake up per night?
Can you feel it's due to leg movement?
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I have had to give up any glass of wine ever! I tried again to have one glass of Chardonnay at dinner the other night and I was up writhing through the night - and no meds helped. Anyone else have this experience?
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Any updates on success with gabapentin? I think ropinirole is augmenting.
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Been taking Mirapex since late Oct. Have been on 1mg for about a month or so now. Doing great falling asleep, but wake up some nights at 4 or 5 and can't get back to sleep many times. Anyone find that an increase in Mirapex or starting Sinemet helped? Dr said he'll decide in February.
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So went back to GP and mentioned I have private medical and I wanted to be referred for help. My GP shockingly said well we can help. So I have been given gabapentin! 5 days in taking one every evening. No let up with rls yet, but I am hoping it kicks in real soon
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So been on gabapentin for 3 weeks now and have only had 2 nights of rls. 2 nights were very mild and the rls was very little and a walk around and back in bed helped. Fingers crossed I will get it less and less now
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I'm wondering if anybody else out there is affected by RLS in the same way I am. It's very specific. Only when I'm falling asleep, my foot will jerk, sometimes rapidly, followed by the whole leg making a violent jerk. There is no sleeping thru that. Once it starts, I know I'm in for a long night because it does not stop. Even if it does, then the other leg will start doing it. (There is that creepy-crawly sensation a microsecond before the jerks, but I can't stop it from happening.) This started in the early '80's with mild episodes 2 or 3 times a week but has increased strongly over the years.
I have incredible empathy for anyone suffering from this affliction / curse and pray daily that the true cause will soon be identified.
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I have been going through opiate withdrawal (withdrawal) for about 2 months I haven't had a percocet for a while I did relapse and take 1 a day for 3 days.
But how long will this RLS end and back muscle pain so I can sleep at night ..
How long for the rls to stop ....
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