Hello, my name is Julie and I have just joined.
I have been taking Ropinirole since being diagnosed with Restless Leg Syndrome in 1991.
This has, of course, increased in severity over 27 years and I am now at my wits end as I can neither sit
or lay to relax. I start work at 4am and finish roughly at 9am 7 days a week delivering newspapers in the
countryside. Its a nice job but I just can’t do it anymore. I wait until 4pm to take the Ropinirole which
eventually will let me lay down and sleep (takes roughly 2 hours of pacing). I am so tired. I am 60 years old but can’t retire until I’m 66.
I have been to our GP on numerous occasions to tell them how bad it has become and how its taken over my life. I cry a lot and that just isn’t me. Our GPs just trivialise it all telling me they don’t know know much about it. I have so many other symptoms that they just won’t listen to.I am going to list my symptoms now:
Every morning I feel sick. I don’t exactly vomit because there is nothing in my stomach to expel but
the sicky feeling can last for 2-3 hours.
I have internal tremors which feels like there is a little engine running inside me.
My muscles from my abdomen to my toes will go into huge very painful spasms and stay that way for upto 3 hours. The abdomen spasms are the worst. As I type this, standing up I am in a lot of pain in my lower abdomen and I feel two rock hard lumps on either side. these will disappear eventually and go soft and more comfortable. My thigh muscles will also go into spasms closely followed by the muscles each side of my shins. My knees will be next and then I can’t walk. It feels like a wedge is being driven deep inside each knee joint. I cry. Ropinirole switches all this off eventually.
I cannot gauge my steps and frequently stumble. When I think I have lifted my right leg high enough (3 inches) to walk over a hosepipe then realise I haven’t and fall. Then cry.
I walk into things and just think I’m clumsy but I never used to be.
I have osteoarthritis in my lower spine and the pain I feel here is nothing compared to the spasms. My
restless legs ALWAYS start in my lower back.
The doctor occasionally allows me some codeine otherwise I take huge amounts of Nurofen which doesn’t help. I also spend a small fortune on Ibruprofen gel which does nothing either.I thought a relaxing massage would be good but only lasted 3 minutes cos I couldn’t lay still. I apologised, paid the lady and went outside and cried. The last time I went to the hairdresser which was March this year She had to cut my hair while I stood up and swayed and moved about. I felt stupid.
This week my spasms have hit my neck and shoulders and fingers. I haven’t told the doctor because he can’t be bothered to listen.
I am in so much pain all the time in one area of my body or another that I do not relax all day but save my 4mg of Ropinirole for when I need sleep before work. You see the Ropinirole not only switches off the symptoms but switches me off too. So my life is ….I walk 19 hours and sleep 5. Im exhausted.
Do you think any of this could be a precursor to Parkinsons???
Any reply I will gladly take on board. Sorry its lengthy and I’m sure I missed stuff out.
Thanks in advance
Julie
Hi there @ju-b-cool.
I’m Tommy and I’m so sorry to hear that you have been having such an awful time and also that you are in WASPI woman category which is basically government robbery.
I myself was diagnosed with RLS in 2001 cause by the delay of a spinal operation.
Since then I have been diagnosed with parkinsons and clonus in 2016 however after parkinsons medication failed to relieve the symptoms and an undetermined dat scan result I have been given the diagnosis of FND which basically stands for no diagnosis (I’ll let you work out what the F stands for). .
Still at least I got to see a neurologist and have a decent gp which is far more than you have received.
The point is every referral I had to be forceful and insist that I be taken seriously.
RLS is a dreadful condition and mine is mainly kept under control with clonazepam and I’m also taking venlafaxine both of these help me to accept the fact that I probably won’t have any definitive answers and not to worry about being given a label anymore.
My right sided tremor is only controlled by walking as it stops when I move but I fully understand how you felt in the hairdresser’s and massage appointments as when I have to wait for more than 10 seconds I’m into the shaking mode sometimes so violent that my spec’s fall off.
But I no longer feel embarrassed and even the spec problem I found a solution in plastic lenses as the heavier glass one’s slid so much easier.
Have you got Parkinsons, who knows? Maybe you will never know.
But if you read the posts on the forum you will notice that you like me don’t seem to double type letters although in my case it is down to typing slower with a stylus.
Also I’m a slave to insomnia, have been for years.
I can only encourage you to be a pest to your gp and insist that you at least have a consultation with a neurologist and maybe talk to your gp about a mindfulness course at the same time as some treatment to help you with the frustration of your condition.
I hope your journey through your condition will become a little easier.
B. W.
TOMMY ™
HI Tommy,
I,too take Venlafaxine 175mg slow release daily. I have not had any natural sleep for 27 years, its all drug induced.
I have been to see a neurologist and even before I got fully into his room, he said, there is nothing more we can do for you. I said its all about dopamine or lack of in my case and he agreed but said there are to many dopamine pathways to be more accurate.I think once the coronavirus has gone I need to get the GP to sit down and start all over again with me saying , maybe this isn’t just restless legs afterall.
My other problem is constipation but having the restless legs I cannot sit on the loo for longer than 3 minutes so I have purchased those incontinence nappy things so I can stand and do the ‘bizz’. Perhaps that’s TMI but my whole life is governed by RLS and shouldn’t be.
I’m really pleased you took time to reply and I appreciate that. I will make a pest of myself but i’m also scared that this could get worse and still don’t get any help.
Hi @ju-b-cool
It’s good that you are talking and don’t worry about TMI.
I’m just the opposite from you as I have to sit down for a wee but on the bright side it is less cleaning up and public toilets are a real problem as standing at the end urinal shaking like a Polaroid picture when some other bloke comes in is not a good look. Believe Me).
I’m on long release venlafaxine 225mg and that seems to do the trick for me as the previous tablet stopped working and I was constantly anxious, afraid even like internal shaking and palpitations but a couple of years ago I got one of those smart watches and I could see that the old ticker was beating normally even though it didn’t feel like it so I was able to do my own cbt really.
Also I went on a proper mindfulness course for 8 weeks with a neuropsycholigist who believed in what he was doing and he has helped me to think about problems and solve them a little piece at a time and not to get that overwhelming feeling of trying to deal with too many things at the same time.
As I said earlier insomnia is my greatest enemy and I have zopiclone for when I am exhausted but I’m not keen on taking it as even double the dose my old grey matter still fights back.
Baby steps Julie.
Stay safe and be kind to yourself.
Hello sorry to see what an awful time you are having. I don’t know if this is practical for you but in your shoes I would consider finding a different GP or at least ask for a second opinion. With all you are having to endure it seems to me the lack of support you feel from your GP is adding to your difficulties. It seems simple enough
How do I change my GP?
If you want to change your GP, visit the GP surgery you want to join and ask them to register you as a patient.
Do I have to give a reason for wanting to change GP?
No, you don’t have to tell your current GP that you want to change. You don’t have to tell the new GP surgery why you want to change, either.
You’ll need to fill in a registration form. A request will then be made to your current GP for your medical records to be transferred to the new GP surgery.
Just a suggestion you may like to try. You wrote an excellent post so an alternative`
could be to print it out and show it to your GP etc it may perhaps help. I hope you
find the right help soon.
Hi Julie
My husband has had parkinsons for 10 years and the pain in his hips, legs and knees is horrendous. Some mornings it reduces him to tears. And what do the Consultant and Doctor do -Nothing. He is now having delusions which are horrible for both of us, as it’s all against me! They have changed his painkillers but I’m not every hopeful.It does seem that Pd is very low on all lists, specially if you are in your 80’ s
I sincerely hope you find a solution
Liz
@ju-b-cool welcome Julie, like you I was dx with RLS in 1991. A lot of what you are saying strikes aachord with me. Keep pushing with your GP or even change GP. I changed GP in 2014 as he retired new younger GP fantastic and we started a long journey together and still do today. He has seen me at my worst and best and got me to the right specialist. Eventually dx with Mr parky 4 years ago, that’s not to say you have parky or will develop it but a good GP on your side will help you find out what is going on.
Good luck, stay strong, insist on help to get some answers
Hello Julie, I’m afraid I have nothing useful to say about what is wrong with you but wanted to say I’m so sorry for your suffering. GP sounds awful, is there not even another one in the practice you can see? Is there anyone who would go with you to support you? Good luck, when we can get back to GP appointments. Helen
Hi Julie.
I am feeling that you are upset and angry as no one has really heard what you saying and I totally can relate when you say that it is taking over your life. I suffered with restless legs and the sleep deprivation made me almost loose my mind but it got better.
You need request a referral to a neurologist by your gp
I can strongly recommend that you call the Parkinson’s helpline. They have been a great help to me.
I can see you’ve received a lot of valuable advice and support form the community and I truly hope this has helped you substancially.
I just wanted to chime in here and echo @juju’s suggestion which is to contact our confidential helpline. We have a team of advisers that can offer addition support on the issues you’ve raised and will be happy to point you in the direction of medical professionals that can help you. Please give us a call on 0808 800 0303 or email us at [email protected].
Julie, I have had many of your symptoms over the years, starting at age 15, this is 60 years later! And yes I have PD since 1993. I have found that learning about supplements was the way to go for me. I do take ibuprofen occasionally for pain, though. Magnesium, lecithin, vitamin E are my main choices for those symptoms. Study up on them and of course find out if the “go” with your meds. I am so sensitive to meds that I was forced to go this road, but it has been a good one for me. Learn all you can: pro and con about the supplements first then you choose whether you want to try them.
Julie, you situation sounds truly awful and I cannot begin to imagine how you have coped so well for so long and held down your job.
Please, please, please, as other people have suggested, change your GP. I do appreciate that in a rural area that may not be feasible if you are in a single handed practice, but it can make so much difference if you can. Maybe your current GP feels way out of her / his depths and so responds in such an unhelpful and unsympathetic way. Maybe they are burned out. Who knows? Sometimes we have to help those who are meant to be helping us, by pointing them int eh right direction and giving them the information they need to help us.
Clonazepam , like Tommy sayes, can help a lot with muscle spasms.
I feel like crying with you…No one should be in the state you are and left to cope, or to have to fight for the treatment that is available to others elsewhere in the country.
I would also second the suggestion of speaking someone on the helpline… It was a nurse there was who put me ( for my OH) onto clonazepam. Expecting GP s or other such professionals to suggest such things may be unrealsitc but once you know about them you can ask…
you are amongst friends on this forum…please keep posting and reading
.
