Anyone else have symptoms this severe?

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JennW
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Anyone else have symptoms this severe?

Postby JennW » Tue May 31, 2016 2:40 am

Hi. I have a recent diagnosis of RLS. I joined the website hoping to connect with others with my experiences, but I'm having a bit difficulty. I'm not sure if I just have an unusually severe case of RLS? Can anyone relate to *any* of my experiences listed below?

1. Has anyone else struggled with RLS, since childhood? Anyone have pediatric onset RLS, but not been diagnosed until adulthood? I'm in my 40's, have had RLS (assuming this is the correct diagnosis) for as long as I can remember, and was only diagnosed about a week ago. I found the article on pediatric onset RLS on this website, and it seems to match my experience, but I haven't seen any actual postings by adults referencing their childhood experiences.

2. Does anyone else have symptoms 24-7 and not just at night or in the evening? Since early childhood, I've had the creepy-crawly sensation and need to move 24-7. Regardless of the time of day, if I'm not moving it's there, regardless if I'm laying down, sitting, or RLS standing still. I've seen casual acknowledgements of daytime RLS on the board, but the postings I've seen all focus on evening and nighttime.

3. Does anyone else struggle to complete basic everyday activities because of need to move? I'm talking about things like taking a morning shower, driving for 5 minutes, eating a meal, reading an entire paragraph in a book, using a computer?

4. Has anyone else had *unmedicated* RLS suddenly get worse? I see lots on augmentation on this board, but that's not what's happening with me--several months ago, the RLS suddenly got much worse for no reason I can fathom.

5. Has anyone else reached a point where moving reduces the pain, but does not eliminate it? That's what I meant by "suddenly got much worse."

6. Has anyone else been blamed for the RLS or been told it is a psychiatric problem? I was always blamed for my RLS symptoms as a child and, not realizing that the people around me weren't struggling with pain, assumed that everyone else was just better at overriding the pain. I truly thought I was a bad girl. When I was 17, I decided maybe insanity was a better explanation. Certainly, when I tried to seek help, every neurologist and psychiatrist I saw during my late teens, twenties, and thirties, told me it was a psychiatric, rather than neurological problem.

7.Has anyone else felt rejected and extremely isolated because of other people's negative reactions to the RLS? Pretty much everyone I've known, for my entire life, has either assumed my constant moving was deliberate & been angry at me or assumed it indicates serious psychiatric problems.

8. Does anyone else have additional neurological problems that co-exist with the RLS, but don't explain the RLS symptoms? Anyone else trying to manage RLS *and* a chronic illness? (I've had Chron's Disease since my late teens.) Was anyone else born with birth defect?

I'm sorry this is such a long post, but I'm feeling very isolated and overwhelmed. I'm finding that instead of feeling relieved that I now have a dx and some support, I'm depressed and angry that the diagnosis and support didn't come four decades ago. I want medical help, but even more than that, I need to know that I'm not the only person that struggles in this way.

Rustsmith
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Re: Anyone else have symptoms this severe?

Postby Rustsmith » Tue May 31, 2016 3:13 am

I cannot relate to all of your issues since the earliest that I remember having any RLS symptoms was in my late 20's. That does not mean that they were not there, but they were mild in comparison to what I experienced later in life and therefore may not have been all that memorable.

In my case, my RLS suddenly got worse when I retired in my mid 50's. I have experienced migraine headaches since my early 20's and had avoided any sort of preventative treatment due to side effects of the first choice med (topiramate) where you have problems with recalling proper names. That would not have been acceptable in my line of work, so I put up with the occasional debilitating headache. Upon retirement, I agreed to start on topiramate. Two months later I started experiencing what I now know was RLS in my arms and abdomen when I would try to go to sleep. My doctor essentially ignored my complaints and just offered a variety of sleeping pills to try. A number of years later a different doctor diagnosed my RLS and gave me pramipexole. It was only then that I realized that I had been having symptoms 24/7 that were very similar to those of augmentation.

So, yes my RLS suddenly got worse and went from being a nuisance in my legs to full body, 24/7. I was never accused of having a psychiatric problem, but my very vocal complaints to a neurologist were ignored for six years. This may be a gender issue. Female patients with male doctors seem to be accused of psych problems when the doctor does not know what to do. In my case it was a male patient and a female doctor who was clueless, so she simply ignored my complaints, told me it wasn't important and then asked if I wanted to try a different type of sleeping pill (none of which worked).

As for additional neurological problems coexisting with the RLS, my migraines fall into that category. Fortunately, gabapentin is used to treat both conditions. I also have very severe upper respiratory allergies, which although not neurological is never the less a chronic condition that I have had to put up with since childhood (imagine having a common cold most of the time).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Anyone else have symptoms this severe?

Postby ViewsAskew » Tue May 31, 2016 7:17 am

So sorry you have suffered so.

1. Has anyone else struggled with RLS, since childhood?
yes, several of us here have. Some of us no longer are on the board, but over the years, there have been quite a few. I've had PLMS since I was a toddler and RLS since my early teens.

2. Does anyone else have symptoms 24-7 and not just at night or in the evening?
It's much more common to have symptoms at night. And while some of us do have 24/7 symptoms, they are always worse at night. Are yours? It's possible you have multiple things going on.

3. Does anyone else struggle to complete basic everyday activities because of need to move?
Not sure if most of us do to your degree. Yes, I have difficulty. I stand in work meetings, I stand at my desk, I walk when on the phone, etc. Never in a shower - that often helps my symtoms.

4. Has anyone else had *unmedicated* RLS suddenly get worse?
Again, over the years, quite a few members have. While mine got worse with augmentation, they never went away when I was no longer augmented (and they are supposed to). Some people have had almost no symptoms and had severe symptoms in just a few months.

5. Has anyone else reached a point where moving reduces the pain, but does not eliminate it? That's what I meant by "suddenly got much worse."
When severe, that is what it is like. I've spent hours walking while still having the urge to move and the sensations in my body.

6. Has anyone else been blamed for the RLS or been told it is a psychiatric problem?
Unfortunately, not as many of us these days, but some. One of our members was put in pysch restraints at a hospital - she injured her arms and legs moving against the restraints. My grandmother was put into a psych ward in the 60s because of it. The average time to diagnosis is long for most of us and many of us have had misdiagnoses and issues.

7.Has anyone else felt rejected and extremely isolated because of other people's negative reactions to the RLS?
I was lucky - my whole family has it, so I never felt weird in that way as a child. As an adult, other than a few people, I've been lucky there, too. Most of my friends and colleagues empathize with me.

8. Does anyone else have additional neurological problems that co-exist with the RLS, but don't explain the RLS symptoms? Anyone else trying to manage RLS *and* a chronic illness? (I've had Chron's Disease since my late teens.) Was anyone else born with birth defect?
No birth defects. I had chronic appendicitis and after my appendix perforated, I lost my ascending colon, secum, and quite a bit of bowel. I've had chronic issues since, along with the year of being sick prior. I have polycystic ovarian syndrome, severe PLMS, chondromalacia in my right knee (a degenerative condition), and have active myofascial trigger points every day, sometimes causing intense pain in my hip, thigh, buttocks, as well as causing migraines periodically. My family shakes their head wondering how I can have so much chronic crap that won't likely kill me, but that makes my life a bit harder to live.

You're in company that will empathize greatly. We won't have had your exact experiences many times, but it's almost a surety that we will understand.

Tell us more about your other neurological disorder. Also, would love to hear about how you experience your RLS/WED. You mentioned pain. Do you have anxiety or an urge to move along with the pain?

Also, have you had your serum ferritin measured, yet?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

jul2873
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Re: Anyone else have symptoms this severe?

Postby jul2873 » Tue May 31, 2016 9:04 pm

Jenn, I had mild, intermittent RLS for years, and then it suddenly got much worse, so I started having it every night. At that time, I was not on any medication so, yes, for me it did get worse and that was not augmentation. I have never taken any prescription meds but I do take kratom, which is a powdered tree leaf that acts on the mu receptors much like an opioid.

I'm afraid I don't have much in the way of help for you, but I wanted to pass along my sympathy and tell you that you are not alone. I get so angry when I read about doctors saying the problem is psychological. At least it seems now there are researchers who are taking the disease seriously and doing some research. I'm 72, and would love to see a cure before I die, as both of my daughters also have it, and I have two granddaughters, who are also at risk. For that matter, I guess my son and my four grandsons are also at risk. Such a lousy disease. Grrrrrrr.

JennW
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Joined: Thu May 19, 2016 1:54 am

Re: Anyone else have symptoms this severe?

Postby JennW » Sat Jun 04, 2016 4:40 am

Thank-you to everyone who responded. It's helpful, somehow, to know that others have dealt with being treated as if the problem is psychological.

I also have a non-verbal learning disability (NLD), another diagnosis that has, in the past, been treated as psychological in origin. Recently, brain scans have shown that the problem is biologically based. I've also got some OCD and a diagnosis of "generalized anxiety disorder," although I think the anxiety stems from years of years of being misunderstood. My understanding is that it is not uncommon people with NLD to also have a epilepsy. I, fortunately, have never had seizures, but I've noticed that some of that some of the same medications are used for both seizures disorders and RLS, so I wondered if there is a connection. I was born with a cleft palate as well and, contrary to popular belief, clefts often go hand in hand with other disorders--for example, learning disabilities.

Yes, I've had my ferritin levels checked. They put me on iron supplements, which did nothing for the movement disorder, but did generally help me to feel better. (Anemia is a bi-product of Chron's, so it's not really surprising that I needed the iron.) Three MD's have looked at the post--supplement lab results & all say that my ferritin levels are now within normal limits.

--Jennifer

ViewsAskew
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Re: Anyone else have symptoms this severe?

Postby ViewsAskew » Sat Jun 04, 2016 4:55 am

Normal limits for us are NOT the same as for people without RLS/WED. Please ask for the actual value. You want your ferritin to be at least 50, and it may be better to be even higher. For me, mine needs to be over 200 before I see any reduction in symptoms and to get it there, I had to have infusions.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Anyone else have symptoms this severe?

Postby badnights » Sat Jun 04, 2016 9:45 am

It's common (anecdotally) for people with WED/RLS to have one or more other disorders, especially neurological or autoimmune ones.

ADHD is not at all the same thing as NLD, but you might be interested to know that there's an association between RLS/WED and ADHD - mothers with RLS are more likely to have children with ADHD, and I think also people with one or the other are more likely to have the other but I forget which way it goes. There is also a well-known association between RLS/WED and anxiety and depression (people with WED/RLS are more likely to have anxiety and depression).

One of my two sons has ADD, anxiety that ranges from mild to extreme, a bit of OCD, and RLS/WED. (No medication for the WED and it;s not destroying his life, like it destroyed mine)

In answer to another one of your questions, I have struggled to complete basic everyday activities, not only because of the need to move but also because I've been so stupid from lack of sleep and - probably - from my medication mix.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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lynncomb
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Re: Anyone else have symptoms this severe?

Postby lynncomb » Tue Jun 21, 2016 5:20 am

Yes, Yes and Yes, I have had RLS/PLMS for 58 years, since I was 7. My aunt told me, it runs in my family. The doctors have tried all the medications and nothing works, or I have severe psychotic reactions. I have pain so bad at night I wake up crying. I also have Diabetes type 2, fibromylagia, chronic fatigue syndrome, severe allergies to every thing, depression, anxiety disorder, and a lot more. I have been yelled at by doctors, told that RLS does not caused pain, but I have pain and muscle knots so bad I limp, until I can get the muscles working. The hard thing is all the medication I must take for all the other things is not good for RLS. Yes, I feel most days that I am not functional and I have had countless people say to me, "Can't you hold still?" No, I can't, I am almost in constant motion and yes, it does make doing anything next to impossible.
So, sorry, I know what you are going through. Also, sorry, I must get up now. Legs are jumping. Peace and hope to you.

badnights
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Re: Anyone else have symptoms this severe?

Postby badnights » Tue Jun 21, 2016 8:22 am

@ lynncomb
I have to admit, I see that list and I think I've gotten off easy. My heart aches just reading it. What's amazing is how you have kept on going, despite it all. I truly wonder how come some of us are still alive.

Of course RLS causes pain. Somewhere between a third to a half of WED/RLS patients describe their symptoms as painful. I've been told it doesn't happen in the arms and doesn't happen in the daytime, but I corrected her and she took it well.

One thing that is curious is your knotted muscles, that aspect is probably caused by something other than RLS/WED. But it's hard to separate out two pains when they happen together and one seems to lead to the other. Are the knots like cramps? Probably yes, but have you tried drinking more water and watching your electrolyte balance?

Sometimes when there are so many things wrong, the only way to improve is to take a totally different approach. Have you tried seeing a functional medicine doctor? They focus on ways to arm your body with all the nutrients it needs to repair itself, making sure you can absorb the nutrients you eat, stuff like that.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

debbluebird
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Re: Anyone else have symptoms this severe?

Postby debbluebird » Tue Jun 21, 2016 8:35 am

Sometimes my PLMs feel like knotted muscles, and it can be very painful, at the top of my leg where they attach. The pull on my legs.

badnights
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Re: Anyone else have symptoms this severe?

Postby badnights » Tue Jun 21, 2016 8:42 am

Ah!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

lynncomb
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Re: Anyone else have symptoms this severe?

Postby lynncomb » Tue Jun 21, 2016 8:38 pm

Thanks, Badnights. What happens, probably the PLMS, I get extermely strong arm and legs jerks. I have whacked my husband a few times, knocked the cat into the air. And I can actually lift off the bed. I only do this for a few minutes then I get up. I also have RLS/PLMs all the time, and pain 24/7. All this jerking leaves muscle knots in all my muscles. I have learned trigger point massage, how to release knots, but it doesn't always work and is very painful. I have a knot in my calf now as big as a small plum and have been working on it for a week. I have used TENS, I have tried ETPS, but it makes everything worse. Too electrical. Also, Fibromyalgia, is bi-lateral, so if is on one side only, it is not that. None of my doctors believe in RLS/PlMS, or that it can cause the pain I have. I had RLS/PLMS long before any of the other things I have and have always had pain. It is very hard to pin point what is causing what. Makes me crazy.
Thanks again. Peace and hope to you. OK, where is spell check?

badnights
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Re: Anyone else have symptoms this severe?

Postby badnights » Tue Jun 21, 2016 9:05 pm

unfortunately we're out of luck regarding spell check here. the board doesn't have one.
Isn't it frustrating when doctors don't hear what we're saying?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

debbluebird
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Re: Anyone else have symptoms this severe?

Postby debbluebird » Tue Jun 21, 2016 9:17 pm

If mt husband didn't see it for himself, he wouldn't have believed it. My leg was jerking a foot off the bed. It was during augmentation and after total knee replacement.

Rustsmith
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Re: Anyone else have symptoms this severe?

Postby Rustsmith » Tue Jun 21, 2016 10:00 pm

I have been yelled at by doctors, told that RLS does not caused pain, but I have pain and muscle knots so bad I limp, until I can get the muscles working.


@lynncomb, considering the complexity of your conditions, you should probably be seeing an RLS specialist capable of managing your RLS along with all of your complicating issues. If it is at all possible, you should consider going to one of the RLS Foundation Quality Care Clinics. The doctors at these clinics truly understand RLS in its many forms and are not going to claim that it does not cause pain or that it is all in your head.

I do not get knotted muscles from cramps, but I do get cramps that would be strong enough to create knots if I did not immediately respond by stretching the muscle. This has been developing as my RLS worsened over the years so that I unconsciously stretch the muscle as it starts to cramp, even when I am asleep. Many times I have awakened about to scream as I am hit by a major cramp, only to realize that I have already tensed the muscles and just have to wait for it to relax.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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