Never Give Up

Hi! I am new here wanted to introduce myself to the group! I have been through a terrible 2 years period of diagnostic studies with multiple mis-diagnosis's including Fibromyalgia, Depression, Chronic Fatigue, Rheumatoid Arthritis and a whole host of Practitioners who thought I was plain crazy. I finally went for a sleep study and found I have RLS, REB Behavioral Sleep Disorder and Narcolepsy. After doing a ton of research (I am a nurse as well) I found that 70% of those diagnosed with RBSD go on the develop PD. All of the above DX's are related to low dopamine and/or ineffective dopamine receptors. If you have been diagnosed with RLS and are NOT receiving relief with the RLS meds you might want to consider the possibility that you could have RBSD in conjunction with RLS which is very common. Since my diagnosis a month ago, I have been taking 1mg Clonazapine at bedtime, Placing a 1mg Neurpro patch 1 hour before bedtime and taking 250mg of Nuvigil (for Narcolepsy) every morning. It has given me my life back! If you have vivid dreams, wake up to find your bed looks like a wrestling match took place in it and you are VERY sore in the morning like someone wailed on you with a baseball bat I would love to hear from you as those are symptoms of RBSD and usually, if you have RBSD you also have RLS. Additionally, you have a higher chance of developing PD. All of these diagnosis's are related to dopamine issues. Additionally, Narcolepsy does not always present itself as falling down in the middle of a conversation into a sleep state. Most people with Narcolepsy do not fall down. They just suddenly feel really heavy, like their body is made of lead and might have some slurred speech or loss of fine motor coordination and seem to 'space out' even though they are still cognizant of what is going on around them. It took me two years to get to the bottom of what was going on with me and honestly...had I not just kept pushing and pushing for the root cause, I would still be on fibromyalgia meds and anti-depressants seeing a practitioner who thought I was a drug seeking loon. I hope my experience can help someone else who is still searching for answers as to why they are still having issues despite the prescribed medications for their RLS diagnosis.

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  • Hi , Welcome to the forum and your interesting post.Pleased you have finally got to the root of your problem and now feeling much better on your treatment. I dont know anything very much about your sleep disorder but from the little I do know I think this is where you act out dreams during rapid eye movement sleep.I remember when my daughter was young this was a possibility we were looking at but it turned outbto be night terrors.Luckily she grew out of it.I get PLMD and RLS and have a delayed sleep phase pattern .

    Think its important to mention for our members that although Parkinson meds are often used to treat RLS there is no evidence of RLS progressing on to Parkinsons Disease.

    Am sure many of us can relate to some doctors looking at us as if we are crazy especially when we say the restless leg syndrome is now affecting my arms etc!

    Glad you now have your life back , good luck ..pipps

  • Hi Welcome. Congratulations that your persistence finally paid off. I've heard that if you aren't going to stand up for yourself, who will...Many people on this forum have several conditions and it seems that they overlap at various points with new conditions brought on by medications. It's a vicious cycle of fixing one thing, then another starts up. You

    need little medicine to correct what you have going on. I assume that all of the testing

    that they did at first came back negative, or at least I do hope so. I chuckled at your experience of having the nurse practitioner look at you like a drug seeking loon.. I can relate.

    As you can see, on this forum, we are discussing ideas and trying to help one another. Kind words as yours really help others. I hope to see you around on here. Your photo with the lake in the background is gorgeous..again, welcome. xx Karen

  • Thank you! The Lake is actually a photo taken from Orcas Island, one of the islands in the San Juans off the coast of Washington near Vancouver Island. My mother and I went whale watching there a couple of weeks ago and saw Orcas and Humpbacks. It was amazing to be able to FUNCTION like a normal person and do something fun :)

  • Thank you for the warm welcome! To clarify the relationship between RLS and RBSD I stated: "If you have been diagnosed with RLS and are NOT receiving relief with the RLS meds you might want to consider the possibility that you could have RBSD in conjunction with RLS which is very common."

    As RBSD pertains to PD I stated: "70% of those diagnosed with RBSD go on the develop PD." This is a statistical fact.

    I guess my main point is this; if you have been diagnosed with RLS, you should NOT have any leg pain, however you could have excessive daytime sleepiness related to decreased quality of sleep. If you have leg, hand, feet or wrist pain upon waking, many Primary care providers will diagnose you with Fibromyalgia. As there is no diagnostic test which can definitively diagnose Fibromyalgia, it is strictly a subjective diagnosis. That said, if one is diagnosed with Fibromyalgia it is important to rule out via clinical definitive testing other causes for the pain.

    In my case, RBSD does cause pain upon waking because my body moves and stays so tense at night it causes a build up of lactic acid in my body. This is the same chemical that causes muscle soreness and stiffness after a good workout at the gym.

    In reading many of the posts here several people have noted pain in their limbs upon waking. This is absolutely not a symptom connected to RLS as RLS pain is usually relieved upon waking when you start moving around. The best research I have found states as follows:

    Genetic studies

    Parkin mutations were found in 10 of 20 patients in 2 families with idiopathic RLS [38]. The clinical phenotype did not differ between RLS patients with and without a parkin mutation [38]. A recent study of 11 patients with 2 parkin mutations and 11 sex-matched patients with idiopathic PD found the prevalence of RLS to be 45% and 0% respectively (p = 0.04), providing stronger evidence of an association [39].

    The full study can be found here: translationalneurodegenerat...

    My greatest concern is that many people are being diagnosed with RLS and Fibromyalgia when in fact RLS and Fibromyalgia presentations are also symptoms of other disorders that can be definitively diagnosed with proper testing.

    In summary, if you are not receiving relief from RLS with your current treatment plan or if your pain does not go away when you wake and start moving around consider ruling out other causes.

    Again,

    Thank you for the warm welcome!

    Terri

  • Apart from RLS and PLMD I had other symptoms which after many consultation were attributed to Fibro and IBS but I was never entirely convinced bit? either diagnosis.It was only when my heart rate got to exceedingly fast levels that it was at last shown through blood tests I had Graves Disease.Since starting on anti thyroid meds many of my so called zFibro/IBS symptoms have either gone completely or much Improved.It is only during the last 6 weeks as Ihave come off anti tthyroid meds with a hope of remission that some of the symptoms have come back.At least now though I know what I am dealing with! I am also getting good relief from RLS from Neupro patch , about 90 percent improvement in sy, ptoms.

    Is there any testing available for you to alert doctors to early signs of Parkinsons now you know you have a high chance of going on to develop It?

  • Basically, I am watching for a specific type of tremor. The average onset for PD once you've been diagnosed with RBSD is 10 to 14 years. Not everyone develops PD however, so I am hoping I fall in the 30% who do not develop PD.

    Other things I do, outside of prescribed medications are related to lifestyle changes. I only eat non GMO organic food. I take supplements to combat systemic inflammation (tumeric, Licorice Tea, Krill, no red meat, no processed foods, B-12 injections (my B-12 was low normal but if you have a systemic inflammatory process, low normal is too low for you so you want your B-12 to stay around 600) I drink organic cream on top milk only from non gmo grass fed cows (higher levels of absorbable Vit. D), and if I feel myself coming down with a bug I mega dose Vit C for a week. I am blessed that I have a lot of friends who are very knowledgable about farmacology (as opposed to pharmacology :) and I use green meds before bed if I have a day where I am feeling particularly achey.

    Except for my Clonazepam, I omit taking all other medications once a week to prevent increased tolerance. I take one day a week and just allow my body to rest from the meds and usually make that day a movie day vegging out on the couch. I have two dosages of Nuvigil 150 and 250. If I know I am going to have a very busy day I take the 250mg. If I am not going to have a very busy day I take the 150mg. Yesterday was my veg day so I watched movies and allowed myself to doze on and off without any demands from my life. I know this is not possible for many people to do, but as my condition was so bad I am listed as disabled and have long term disability coverage from my previous employer so I still get 60% of my base pay.

    At my worst in 2013, my 72 year old mother was having to help me get out of bed, get up off the couch, help me remember things. If not for her I would have been put in a nursing home at the age of 48 because I just could not function.

    The physician who finally diagnosed me correctly is awesome, awesome, awesome. I do not take any pain pills. I wake up AWAKE :) I have mild apnea and use a cpap which did wonders for my asthma and I SLEEP instead of being stuck in a REM state in a boxing match with the mattress. I do still have narcoleptic episodes usually in the evening when the Nuvigil is wearing off but I am no longer falling into microsleeps while sitting at a traffic light. I am having an MRI done tomorrow just to make sure there are no underlying issues with my hypothalamus and to rule out any plaques in my brain that would indicate Alzheimer's. I do not think I have Alzheimer's because a lot of my memory issues have resolved with getting adequate sleep and controlling the narcolepsy with the Nuvigil.

    I would not wish on my worst enemy to go through what I went through for the past 2 years..... I love life. I get up every day and look forward to doing things and I am so grateful for Gods Mercy in leading me to Dr. Daniel.

  • RE: your Thyroid..... make sure you are taking Krill Oil. It is the highest natural source of Iodine and Omega 3's. Start drinking grass fed cream on top organic milk too. Most people who have IBS or are lactose intolerant do not have a problem with grass fed organic milk. It is the processing of milk and all the steroids and antibiotics that people are intolerant to. Especially if the cow has been given an antibiotic you are allergic to.

  • I have an overactive thyroid not underactive so I have to keep my iodine consumption as low as possible .No sea foods /seaweed etc

  • Research Lithium used to reduce thyroid function here:

    thyroid.org/patient-thyroid...

  • Sorry about duplicating !

  • Sounds very interesting (except being in the same room with you at night). I'm unfamiliar with your syndrome and definitely feel for you. I am also interested in your farmocology experience and what you've learned.

  • There is so much to say on this topic I am not sure I can convey it all in one post lol. Many people with RLS also suffer from fatigue and morning pain. When I was in the process of ruling out all the possibilities that could be affecting me I looked into things like Fibromyalgia, Rheumatoid Arthritis, Lupus and Chronic Fatigue Syndrome as well as RSD. In looking at the group of diagnosis as a whole, they all share one commonality: Systemic Inflammation.

    Many people with autoimmune disorders think that boosting their immune systems with things like Echinacia will help their immune system issues. The opposite is true. If you have a systemic inflammatory response, the last thing you want to do is take something that makes your immune system MORE responsive. So you actually need to stay away from things that boost your immune system. Additionally, there is a group of plants called Nightshades with promote inflammation in your body. Tomatoes, Peppers, and certain spices fall into the Nightshade category.

    Also, as far as green medicine goes, canibanoids are proven to reduce inflammation and reduce pain. In fact, there are methods in which you can remove the THC (the chemical in cannabis which causes mind/perception changes in the brain and- gets you high) from cannabis and works very well in pain relief and reducing inflammation. Read the study here:

    newscientist.com/article/dn...

    Another thing to think about in your diet is this: If you have allergies to certain antibiotics you could be reacting to antibiotics fed to the chicken, beef, eggs you are eating if you are not eating non-gmo or non-organically raised food. There has been a very high link between auto immune disorders and eating GMO food. Leaky gut (IBS) included. If you have the change go watch the following videos on Youtube: Genetic Roulette and Food Inc.

    I have found that one of the best natural treatments for chronic inflammation is Tumeric. You can make a drink from it called Golden Milk and it works wonders.

    Additionally, taking L-tyrosine can help you increase your dopamine levels as it is the basic building block your body needs to make dopamine. Read this article here for the Dopamine Diet:

    doctoroz.com/article/dopami...

    I have so much more in my head but it would take writing a book to get it all out. I hope this helps!

    Terri

  • I say I only have PD but recently I remembered all the sleep walking reported about me as a child. Fortunately much of it tapered off later in life (or at least there's no one around to tell me otherwise). I still remember (some 27 years ago) hitting my ex-wife with my elbow so hard it woke us both. I pretended to be asleep hoping she would think she had only dreamed it. She thought I had knocked a crystal vase down on her head. That was the only time she was injured by me but I talked in my sleep a whole lot then and of course the only way I know this is someone had to be awakened to repeat what happened.

  • RLS-RBSD-Narcolepsy, You have been more helpful to me than you could ever know. I am suffering an inflammation like none other- it's 99% of the reason that I am going to a major hospital in about 2 more weeks!!! I have to get those numbers down or I am going to suffer a very bad fate in a short time!!! I'm eating so healthy! I mean extremely healthy to get all better and just for life in general...it's the antibiotics in the animals!!! I have had severe reactions to several antibiotics in the past!! None were little reactions..I know it's that!!

    Also, I eat tomatoes and peppers especially like there is no tomorrow! I hardly even know how to cook without using tomatoes. I use both fresh and powdered turmeric in my diet. I have never heard of golden milk.. lol.

    Thank you, thank you, thank you... I wish that I wasn't going to the major hospital in the USA for this quite so soon.. I plan on testing the theory starting this moment.. X Karen

  • Yikes, I hope your doctors can get things under control soon! Here is a good recipe for Golden Milk if you want to try it:

    healthy-holistic-living.com...

    Prayers and more prayers for you!

    Terri

  • Here is a good article on the Nightshades with references to studies. The second page contains a list of Nightshades you should avoid:

    greenmedinfo.com/blog/link-...

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