New here, just diagnosed but not sure it really is RLS...

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jerrymeadlucero
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Joined: Mon Apr 29, 2019 2:39 pm

Re: New here, just diagnosed but not sure it really is RLS...

Postby jerrymeadlucero » Tue May 07, 2019 2:40 am

Hey all, update from my neurologist visit today. So I got my ferritin test results. 36!!! And that was after I had already started taking iron supplements for several days. It looks like from all the people I have talked to on this forum, the folks I have talked to on the phone at the Southern California support group and Coachella Valley support group, all the online research I have done, and the assessment of my primary care doctor as well as my neurologist and my test results, that I definitely have RLS/WED, but that I also have other things going on in addition. The other things are not totally clear yet and further tests are planned, but a RLS/WED treatment plan is in the works. I certainly need to get my iron up!

On the ropinirole, my neurologists agrees it is not a good choice and obviously is not working for me, so he is going to wean me off of it over the course of 3 weeks. It was my primary care who started the ropinirole and that looks to have been a big mistake. I am going to be doing an oral treatment of 3, 325 mg of iron nightly along with vitamin C. He is also allowing me to add another 600 mg of gabapentin during the day to the 600 mg I take each night to try to deal with the pain I am feeling throughout the day. For a total of 1200 mg of Gabapentin a day which is in line with what I am hearing from RLS sufferers who use gabapentin and find it effective. I have found it somewhat effective and hopefully, the increased dosage along with the iron will increase the effectiveness.

For my leg cramps, the neurologist is recommending a tonic water with Quinine as my recent cardiologist showed my heart in good shape and given my age, Quinine should not be a big concern and may offer some leg cramp relief. I have more blood tests planned to assess the possibility of blood vasculitis among other things, as well as the results I am expecting on Thursday for lactic acidosis and some other stuff.

I go back for another visit in a couple of weeks to see how things are progressing. I am due to make a road trip in early June which I had all but canceled. At this point, I will see if there is an improvement. We discussed if the pain symptoms do not improve by then perhaps trying a short course of hydrocodone just for the week of the drive to see how it affects me. I would rather avoid that but open to it if I see no improvement in the next month. I really hope I see some significant improvement soon as even though I am up to 5-6 hours of broken sleep a night now and can drive for about 30 to 45 minutes at a time, I am still highly sleep deprived and mostly homebound and not working.

Question for those with experience, how long did oral iron supplements take before you saw improvement?

Does my RLS/WED treatment plan sound good to you?

Rustsmith - Thanks for the advice. Yes, I am staying well hydrated. And one of the first things I got the first week this started was a blood test to test all my levels (magnesium, B12, potassium, all that stuff) and they were all good, perfect actually. Despite that, I started taking supplements right away. So that stuff is definitely not my problem. And on the hot water and stretching, that is exactly what I do every day. Luckily I have a hot tub in the community where I live. I go there almost every day since this has started. Soak for 20 minutes then walk the pool area for 20 minutes, then soak for 20 minutes and then walk the pool area for 20 minutes and repeat that for 2, 3 even 4 hours since I can’t work, sit or do much else.

Leggo_my_legs - I know I am doing the opposite of your advice on the Gabapentin, but I feel the Gabapentin has been helping. Especially for the pain in the back of my legs that prevents me from sitting comfortably, the burning sensation I was having and other things. I really, really hope it is not the source of my muscle tightness or I am totally screwed. But others I have communicated with swear by Gabapentin as a relief for the RLS. And since I dumping the ropinirole now, Gabapentin is all I got. Are you dealing with RLS primarily without pharmaceuticals?
Beth - So I am going to get off the ropinirole first as you suggested, but as I mentioned above, I am going to stick with Gabapentin for now, but I might take your and leggo_my_legs advice a couple of months from now if I get no relief. I PRAY though that it does not take that long as I can’t imagine living like this for another couple months.

jerrymeadlucero
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Re: New here, just diagnosed but not sure it really is RLS...

Postby jerrymeadlucero » Fri May 10, 2019 6:19 am

Hey all, I know several of you have already spent way too much of your time responding to my posts and concerns, but I would really love to hear your thoughts on my last post about the diagnosis and the treatment plan. Any insight is very much welcome.

stjohnh
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Re: New here, just diagnosed but not sure it really is RLS...

Postby stjohnh » Fri May 10, 2019 1:50 pm

jerrymeadlucero wrote:Hey all, I know several of you have already spent way too much of your time responding to my posts and concerns, but I would really love to hear your thoughts on my last post about the diagnosis and the treatment plan. Any insight is very much welcome.


Mostly sounds reasonable. Only a couple of quibbles. It is very unlikely that 3 tablets of iron will work better than one tablet. Iron absorption in the intestine is strictly limited by hepcidin to prevent iron overload of the body (very bad) and 3 tablets has a much greater chance of causing stomach upset. If you can take 3 at a time and stomach feels ok, then no problem. If your stomach bothers you in the 1-2 hours after the 3 tablets, cut it down to two or one rather than stopping it altogether.

Quinine water has been shown to be ineffective for leg cramps.
Blessings,
Holland

jerrymeadlucero
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Re: New here, just diagnosed but not sure it really is RLS...

Postby jerrymeadlucero » Sun May 12, 2019 4:40 am

Thanks for the reply Holland. So far the three iron tablets are not bothering me and I am taking them with chewable vitamin C as well to make them more bioavailable. Given I suffer from real problems with GERD its a minor miracle that I don't have any issue. On that note, however, I now wonder if my iron deficiency comes from being on a daily 40 mg dose of Omeprazole for 6 or 7 years now. It is the only way to keep my GERD in check, but I am reading that PPIs can lead to iron deficiency. Anybody else heard of this?

I would still love to hear from more of you what you think about my neurologist plan for dealing with my RLS/WED? In particular, I am interested in hearing from people who used oral iron supplements like I am to boost their Ferritin levels. How long did it take you? My neurologist says I don't qualify for IV iron treatments at this point. And to be honest, as much as I fear needles in veins, I would rather avoid it. I am also really curious about the idea of the short course of opioids to get me through my planned road trip in early June. I am so afraid of opioid addiction or dependency. I know many of you find opioid treatment your best option and have avoided dependence. If I take an opioid for a week, what are my chance of developing a problem?

What's most frustrating is dealing with my symptoms that seem to fall outside RLS/WED and no one has an answer to still. A couple of days ago I had one of my worst days yet were my left leg calf muscle was cramping for some 16 hours until I finally passed out sedated on a sleep drug and exhaustion. I never want to experience that again! Honestly, that experience made me near suicidal. And this damn pain on the back of my thighs that makes sitting uncomfortable that I just can't seem to get rid of.

Polar Bear
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Re: New here, just diagnosed but not sure it really is RLS...

Postby Polar Bear » Sun May 12, 2019 12:42 pm

Since I have been having ferritin checks, about 8 years, my ferritin was around 160/170. Three monhs ago approximately it dropped to around 50 with no ideas why from my GP. For 3 months I've been taking oral iron and am due to have a ferritin check so no idea yet if the oral iron has done any good, or would have had any effect within the time span - sorry I can't yet tell you if it has been of benefit to me.

As part of my RLS medication I take 150mg codeine phosphate daily, dosed over the 24 hours. Been taking it for several years without issue. I have now reduced my Ropinerole by 80% with the addition of Lyrica to ease the reduction. I would anticipate an increase in opioid help will be needed as I get lower. I hope that we can eventually control my symptoms with an opioid and possibily keeping with the Lyrica. I will accept that I am opioid dependent. I have no problem with being opioid dependent if this is what it takes to provide some quality of life.

Whatever medication we take for whatever chronic condition are we not dependent, if we take medication X are we not then Medication X Dependent.

My own opinion is that taking an opoiod for a week would not make it a addiction/dependency problem.
However, this is not to say that it would not be possible.
This link is to the Mayo Clinic - How Opioid Addicition Occurs
https://www.mayoclinic.org/diseases-con ... t-20360372
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

jerrymeadlucero
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Joined: Mon Apr 29, 2019 2:39 pm

Re: New here, just diagnosed but not sure it really is RLS...

Postby jerrymeadlucero » Sun May 12, 2019 7:14 pm

Thank you for your reply Betty and well said on the opioids. I am inclined to agree if it is making your life work, than it works. I think I am probably overly cautious due to the opioid hysteria, which I really do fear is going to make life really hard for people like yourself (and perhaps myself) who really need them.

I know this is not the place for this really, but as my primary care "doctor" (not really even a Dr., a PA) is very unresponsive and hard to actually get seen by, despite what I am going through, I have noticed several other health changes that have accompanied this month-long saga that have me concerned...

Weight Loss: In the past month since this has all been going on I have lost 13 pounds! Now, normally I would be thrilled as I have wanted to lose 30 pounds for years now and never managed to lose more than 5. But right now I weigh less than I have in probably well over a decade. I guess it could be all the stress, lack of sleep, etc., but it seems odd. Especially with the increased gabapentin which I understand usually makes you gain weight.
Should I be concerned? Interestingly, I feel like I might have lost some mass in my thighs in particular which I wonder if could be why they are so sore and painful when I sit on them.

Blood Pressure Increase: During the past month all my blood pressure readings are high. That is unusual for me. Could it be one of the medications? But ropinirole and gabapentin are not known for that I think.

OK, sorry for this gross one, I hope I am not pushing what's acceptable on this forum...

Greenish/Blackish Stools: This has been happening for the last several weeks. I am inclined to blame it on the iron supplements but it seems to have predated when I started taking those.

Again, I know this is an RLS forum, that none of you (I think) are doctors and that I am perhaps going off topic but I am desperate to try to figure out what the hell is going on with my legs and wondering if this other stuff has any connection. Wondering if any of you recognize any of this.

stjohnh
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Re: New here, just diagnosed but not sure it really is RLS...

Postby stjohnh » Sun May 12, 2019 8:42 pm

jerrymeadlucero wrote:
Weight Loss: In the past month since this has all been going on I have lost 13 pounds! Now, normally I would be thrilled as I have wanted to lose 30 pounds for years now and never managed to lose more than 5. But right now I weigh less than I have in probably well over a decade. I guess it could be all the stress, lack of sleep, etc., but it seems odd. Especially with the increased gabapentin which I understand usually makes you gain weight.
Should I be concerned? Interestingly, I feel like I might have lost some mass in my thighs in particular which I wonder if could be why they are so sore and painful when I sit on them.

Blood Pressure Increase: During the past month all my blood pressure readings are high. That is unusual for me. Could it be one of the medications? But ropinirole and gabapentin are not known for that I think.

OK, sorry for this gross one, I hope I am not pushing what's acceptable on this forum...

Greenish/Blackish Stools: This has been happening for the last several weeks. I am inclined to blame it on the iron supplements but it seems to have predated when I started taking those.


Jerry,
I think you should probably see an MD. Unexplained weight loss is always a serious concern. Your thigh pain is not RLS. The green-black stools are from your iron. No topic is off limits as long as it is presented in a compassionate way and not a personal attack. Recently this forum had a thread going on orgasm as a means of treating RLS.

What other meds are you taking besides ropinirole and gabapentin? Lipitor and it's relatives can make for muscle pain. Hyperthyroidism can cause weight loss and increased BP. There are lots of others, but seeing an MD will help, preferably internal medicine, but any MD that will actually listen to you is better than what you have.
Blessings,
Holland

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Re: New here, just diagnosed but not sure it really is RLS...

Postby badnights » Mon May 13, 2019 8:11 am

jerry, sorry I haven't been around
I'm glad you've got people trying to figure out what's wrong

I wrote all the stuff below as I was reading your older posts - - but after reading your weight loss post, I am adding this at the top -- I can;t say anything about it as well as Holland has, so just follow his advice! You're still looking for a trigger for your sudden-onset WED/RLS, and black stools and weight loss make me think of scary things that involve internal bleeding, and the resultant iron loss triggers WED/RLS, which is actually a signal of something more serious. Even if the black stools are from your iron pills, whatever problem is causing weight loss could be the main issue that WED/RLS is secondary to.

And for the rest of it : I'm too zopicloned to edit , so I'll dump the words on you as I wrote them:

My experience with iron might be helpful - I notice worsened symptoms about 3 weeks after stopping it or cutting the dose, and improved symptoms about 3 weeks after returning the dose to normal. It took months to raise my ferritin initially, but I was taking much less iron than you are, and fumbling along without any medical advice. I currently take excalty what you're taking.

Your doctor may or may not expect this but you wll probably have to keep supplementing with iron indefinitely. Once your ferritin gets over 100, he might say "yay, you can stop now". If you stop, notice if your symptoms begin to come back/ get worse, and go back on the iron if they do. Preferably getting a ferritin test first, but that's not always possible.

I wish he had just advised you to cold-turkey the ropinirole. The chances of their being any issues related to a rapid withdrawal seem very small to me. But at least he agrees with stopping it. And at this point, upping the gabapentin is a reasonable course of action. It has the advantage of treating both the WED and the neuropathy.

You still haven't determined what life event, other than the EMG, might have triggered the WED/RLS into becoming a problem. There has to be something, it was such a well-defined moment.... Your other post in which you mention Omeprazole makes me wonder, though, if the WED/RLS has been building up for a while and might be related, not only to impaired iron absorption brought on by the PPIs (yes, I think that has been documented), but also to bad gut bugs that have been encouraged by the PPI. There's not as much support for bad bugs causing neurological problems, but there is some; it's kind of fringe thinking but not too too fringe. I shouldn't write these posts when I've had my zopiclone already.....

Re opioid addiction, know what it is, and what to be aware of, and you need not have fear of it. A short prescription is an excellent idea for a road trip, and in the current climate you're lucky to have a doctor who suggested it. Addiction is uncommon among RLS/WED patients, but not unheard of. Addiction is wanting to take the drug in order to change your mood or mental state. It is not wanting to take the drug in order to quell your pain, your distracting or discomforting sensations, or the urge to move. So if you want more medication than prescribed, pay attention to why.

You can be physically dependant on a medication, which is not addiction. Dependence means your body will suffer withdrawal symptoms when the medication is stopped. AFter some time, your body re-balances, so to speak, and the withdrawal is over.

You can also become tolerant to a medication, which is when you need more of it to get the same symptom-relieving effect. Tolerance is common with almost all medications, including opioids, and is not a sign of addiction.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jerrymeadlucero
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Re: New here, just diagnosed but not sure it really is RLS...

Postby jerrymeadlucero » Wed May 22, 2019 9:14 pm

Hey all, finally posting a LONG overdue reply. Once again, thank you all for your thoughtful responses. They mean a lot. And I feel the need to apologize for not responding back for over a week. You deserve at least some response after giving your time to respond to my questions. Honestly, I have been in pretty deep despair and depression over my ongoing situation and lack of improvement and wasn't sure what to say. At the heart of my despair is my growing belief that RLS, though probably a factor in my symptoms, is not the primary problem (or more likely problems) that is making my life miserable. I had hoped before returning to the board to respond I would have some positive update to offer but all I have is more disheartening news. I was able to attend the Spring/Summer meeting of the RLS Support Group for Southern California last Sunday in Rossmoor California, despite the challenge of making the 2-hour one-way drive. Despite the severe pain, the trip caused, especially on the return trip, it was well worth it to meet the wonderful folks with the Southern California RLS Support Group (especially Susan) and Dr. Buchfuhrer. The disheartening part was to have Dr. Buchfuhrer basically confirm what I already believed, that the pain in my thighs, the tightness in my leg muscles and the cramping in my calves, is not RLS and these are the things that are making my life hell. The positional pain in my thighs that made the two-hour drive so excruciating has become my predominate problem, preventing me from working or just living life with any normalcy, but as you all already know, "positional" pain is not RLS. And since the tightness, cramping and weird feelings in my calves also are "positional" in that moving my leg in a certain way, or putting it in a particular posture or holding it in a specific position or bumping it against something will set them off, this is likely not RLS either. Honestly, I still think RLS is in there somewhere, but I am finding less and less of my symptoms that point to RLS. The main RLS factor is that it worsens at night (though I have it all day) and that my legs at rest will have issues that require me to move, but in my case to relieve the tightness and the beginning of cramps, not the reason I think most of you feel compelled to move.

So I am almost off the ropinirole now. One more week at .25 mg and I am done. Though now that I think RLS is a secondary, more minor factor, I am not sure that was the right move. But I guess I am glad to be off ropinirole regardless. I see my neurologist, tomorrow and I am going to put a real push on for him to consider muscle relaxers instead of RLS focused treatments. Since Flexeril did not work for me (though I was only on it for 3 days) I am thinking I would like to try Baclofen instead. Will see what he says. He also suggested if nothing else worked, and the Gabapentin seems to be only mildly helping at best, that we might try a short course of a low dose opioid to see how I respond to that. I am up for that at this point. I am going to ask him about Tramadol as it is the only opioid that works for Fibromyalgia according to recent studies and I am starting to think I might have Fibromyalgia which my mom has. Also, my psychiatrist has suggested possibly trying Nortriptyline which is on the RLS safe list put out by the foundation. It is used not only for depression but also nerve pain and there is some small evidence it might help with leg cramps. If anyone has experience with these drugs (Baclofen, Tramadol or Nortriptyline) I would love to hear your thoughts.

I also plan on asking my neurologist to consider ordering a spinal MRI and perhaps even a brain MRI to rule out things like MS, some sort of spinal nerve pinch, or something like that. I started to really wonder about some sort of very a-typical type of sciatica explaining the back of the thigh pain at least but not only do many of my symptoms not match, I also have been having mild soreness and cramping feelings in my arm muscles as well over the last month. I kind of thought maybe this was somehow a reaction to the ropinirole as it started after I started taking the ropinirole, but that is not likely. I also wonder if I need to increase the Gabapentin as I only take 1200 mg total at this point, 600 mg during the day and 600 mg at night. I know many of you taking twice or more than that just at night.

It doesn't help matters that I had to dump my GP in the midst of all this for not being responsive, helpful or competent. Now I won't have a new GP until June and not sure when I will actually be able to get to see him. On the good news front, I have an appointment with a pain clinic on May 29th and I am really looking forward to that.

On my weight loss, that has turned into weight fluctuations. After dropping 13 lbs in a month which I mentioned in my previous post, in a 48 hour period I gained 8 lbs! Then lost 3 lbs in a day and gained it back the next. Lately, I seem to be bouncing between 208 and 204, but never as low as the 199 I experienced when I made that previous post. But since I have no GP, I have no one to discuss this with. Before I hear anyone say check my scale, this is using three different scales all getting identical readings. My blood pressure also continues to be elevated.

People asked about all my medications...

Metformin HCL 1000 mg (twice daily) - For my type 2 diabetes. Been taking for 6 or 7 years

Imitrex (Sumatriptan) 100 mg (as needed) - For migraines

Omeprazole 40 mg - Daily in the morning for my GERD. I have been taking this for 6 or 7 years and suspect this may be responsible for my low Ferritin level as PPIs have been associated with anemia.

Gabapentin 600 mg - Twice a day

Topiramate 25 mg - Once a day

Ropinirole - Was at 1 mg now at .25 mg and will be done in a week

Atorvastatin 10 mg - I was taking this for 6 or 7 years but stopped a month ago fearing it may have been the source of the leg cramping as statins have been known to do that. But stopping taking it has not helped.

Bupropion XL 150 mg - Started taking this 3 weeks before my symptoms started and stopped taking as soon as they did out of caution. Have basically not taken since and has no effect on symptoms.

Trazadone 50 mg - Started taking this 3 weeks before my symptoms started and stopped taking as soon as they did out of caution. My neurologist blames my "RLS symptoms" on Trazadone, even though it's on the RLS safe list and there is almost no evidence of this. Have stayed off it since and has not made a difference.

Temazepam 15 MG - Only occasionally to help with insomnia caused by all this.

Magnesium supplement - started after all this started.

B Complex supplement - started after all this started.

Iron supplement to increase Ferretin along with chewable vitamin C

Leg Cramps supplement with quinine and tonic water with quinine on the advice of my neurologist

Low Dose Aspirin

One last thing, I also feel the need to apologize for not commenting on other peoples posts on the board. I feel I have been using this board very selfishly. I would like to correct that and to offer the type of aid and comfort that many of you have offered me during all of this, but the problem is I feel like I am so in the dark myself I don't know what I could really offer anyone else other than more question. So please excuse me for being so one-sided on this board.

stjohnh
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Re: New here, just diagnosed but not sure it really is RLS...

Postby stjohnh » Wed May 22, 2019 10:35 pm

Jerry,
Thanks for the update, sorry your problems are continuing. I'd push for the spine MRI. Various types of pinched nerves or spinal stenosis could be causing the thigh/calf pain. I had a spinal cyst that took 6 months to diagnose, and was misdiagnosed by 3 doctors, all supposedly experienced in reading spine MRIs. Spine surgeon was the only one that got it right. When I woke up from the spine surgery, I was totally cured. I had been on large doses of opioids and could barely walk.
Blessings,
Holland

badnights
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Re: New here, just diagnosed but not sure it really is RLS...

Postby badnights » Thu May 23, 2019 5:41 am

jerry it's ok to be one-sided here. I think almost everyone here started in a desperate state that was necessarily very self-centered. A lot of people interact most during their darkest phase and then we hear less as they get better. That's OK. It's also wonderful to want to give back. But if you don't have the strength, or energy, or simply don't know what to say, that's OK too. No one is going to think poorly of you! :)

Also, there is no obligatation to reply promptly. I sometimes can't make it here for days at a time and I'm a moderator! We all just do the best we can, and the fact is, sometimes that's not much. After all, we suffer from medical issues, otherwise we wouldn't even be here. So be gentle in your expectations of yourself.

I think it's great that you made the trip and met Dr B. Isn't he a lovely man? I'm glad he confirmed our suspicions. You could have some WED/RLS without it needing any attention or management (in most people who have it, it's occasional and minor). But don't try to evaluate whether you do or not until you've been off the ropinirole for 2 weeks, since the ropinirole may actually have caused a temporary worsening of RLS/WED that was previously not a problem. Your doctor seems very conservative with the taper. Mine was cut off cold turkey.

I hope your new GP is more aggressive in seeking the reason for your issues. I hope you can get the spinal MRI!

A word on quinine. Unless the quinine has given you a noticeable benefit, I personally (not being a medical professional) would stop it, given that it can have some serious side effects (and it usually isn't very effective). I just found a mention that quinine can have "severe drug interactions" with aluminum-containing antacids, which I thought I would mention given that you're currently being treated for GERD. Also there is this: "A four-week trial of quinine could be an option for fully informed patients experiencing frequent, severe cramps that disrupt their sleep, but only after treatable causes have been ruled out and nonpharmacologic measures have been shown to be ineffective... During the trial, patients should be closely monitored and the quinine stopped after four weeks if there is no benefit. If treatment continues, patients should be followed and advised periodically (e.g., every three months) to try stopping the drug to reassess the benefit." (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4347765/)

Let us know how it goes!
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: New here, just diagnosed but not sure it really is RLS...

Postby ViewsAskew » Fri May 24, 2019 4:32 am

Aw, I wish I could give you a hug (if you are a person who likes hugs). I almost went to that meeting at Rossmoor! Not that I want you to have something else, but SO glad for you that Dr. B. was there and could give you his medical advice.

OMG - when I first came? I was a HOG for information, lol. Getting, not giving. If at some point you are able to be in a different position, great. If you are not, great. Truly. We are here to help - each other, ourselves. However that happens is all fine.

Question....did the pain start after the ropinerole? I have taken my nightly sleep meds and not functional enough to sleuth the answer. If it was there first, ignore this. If it came after, though, consider that some people do have leg pain from it.
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.

Polar Bear
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Re: New here, just diagnosed but not sure it really is RLS...

Postby Polar Bear » Fri May 24, 2019 10:21 am

Congratulations on making such a difficult journey to get to the Rossmoor meeting, it is a measure of your determination and your issues. It was such a bonus that you got to speak with Dr B, he has been such a saviour to most of us at some time or another not only through his imparted information and advice but he even responds to random emails. We are all so grateful for his presence.

I am another who first came to this Discussion Board with nothing to offer and arms open to take take take all that I could find. That is what we are here for. To hear back with your updates helps everyone, even if you don't have RLS.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Brynmr
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Re: New here, just diagnosed but not sure it really is RLS...

Postby Brynmr » Mon Jun 03, 2019 9:00 am

jerrymeadlucero wrote:Urge to Move: I find this one so hard to answer. I guess I feel the urge to move mainly because... A. I feel my calf muscles getting tight and I feel the need to stretch them, especially out of what I admit is probably an irrational level fear that they are going to cramp/spasm if I don't keep them lose. Or... B. The painful soreness on the backside of my thighs finally gets too much and I need to get up to relieve it.


I have RLS and this sure doesn't sound like RLS to me. These symptoms aren't like anything I have. The urge to move with RLS is a tsunami that sweeps you up in it's power like you're a ragdoll. Along with this comes an anxiety that makes you do anything and everything to stop what you're feeling. I don't get any cramping.

jerrymeadlucero
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Re: New here, just diagnosed but not sure it really is RLS...

Postby jerrymeadlucero » Wed Jun 05, 2019 8:21 am

Once again I feel the need to thank you all for helping me through this difficult time as I try to figure out what the hell this illness is that has taken over my life.

Holland - Thank you for the advice on the spine MRI. Yes, I am pushing for this. My new pain management doctor agrees but the first step with my insurance is to to get a full spine x-ray which I did last week. Waiting on those results currently. Yes, some sort of spine-related problem like a pinched nerve would be a good candidate for my leg pain. I actually in some ways hope this is the cause as I think it might be the simplest and easiest to address and avoids a more chronic, incurable disease which are the other scenarios. Unfortunately, it would not explain the increase of pain symptoms in my arms. More on that later.

Beth - Thank you again for all your advice and concern. It really means a lot. I have been off the Ropinirole now for over a week and have seen no effects from it one way or the other. Just more evidence that RLS is not my main concern. Glad to be done with the ropinirole and really glad I suffered no ill effects of getting off of it. I have a new GP now. BIG IMPROVEMENT! So high hopes there. My neurologists who has been the primary one I have been dealing with for my symptoms at this point has also referred me to a rheumatologist, which I think is a great next step given my symptoms. My list of doctors is getting quite long now... 1 GP, 1 neurologist, 1 pain specialist, 1 rheumatologist, 1 psychiatrist and I will be seeing a physical therapist soon as well, LOL! Hopefully one of them can figure this thing out. Thanks for the info and advice on the quinine. I think you are right about stopping that. I don't think it made much difference anyway.

Ann - I will take that virtual hug! I am all about hugs!!!! The more the better. Thanks for the support and I really hope I will have insights and some point I can start giving back to this community. I almost hope that RLS is part of the explanation of my situation if for no other reason than I am so impressed with the deep caring and sense of community I have found here. I now that is a stupid thing to say as I would never hope to have any illness including RLS, but I just mean to say I really have enjoyed being a part of this community. To answer your question on the ropinirole, I was prescribed the ropinirole for the leg pain and cramping. It did not seem to help and I don't see much difference being off it now for over a week.

Betty - Thanks for the support. Yes, it was really great meeting Dr. B. His opinion and everything else I have found out in the past two months has pretty much clarified for me that RLS is not my main problem. I am still tempted to set up an appointment to visit with him to clarify this further, but the $350 for the consultation is tough for me to do right now. Especially since I have not been able to work for 2 months. We'll see. Thank you for making me feel welcome despite my selfish use of the discussion board and I will endeavor to give back to this wonderful community as well.

Brynmr - Yes, I agree. It is pretty clear to me now that RLS is not my primary issue.

This brings me to my update. My neurologists and I agreed to try a muscle relaxer as muscle cramping and tightness along with nerve pain seems to be my primary symptoms. I am now on Baclofen. Currently, 10 mg three times a day which will slowly be increased over several weeks to 20 mg three times a day. I have been on it a week and it seems to be helping a bit. My pain doctor also prescribed lidocaine patches. And I am doing 1200 mg of Gabapentin (600 mg twice a day). The combination of all three seems to reduce my symptoms by 30% to 35% I would say so far. Improvement, but far from a solution. Will see if things improve with the increased Baclofen dosage. The Baclofen comes at a cost, however. It makes me VERY drowsy. This is good for sleeping at night. I can now get a full 8 hours sleep, though still very broken. But I also feel very sleepy throughout the day. Hopefully, this will improve with time.

Perhaps the most concerning development is the increase in symptoms in my arms that in many ways mimic my experience with my legs. When this all started 2 months ago after the first two weeks I started to notice some pain in my arm muscles. Very minor compared with my legs but clearly similar to what was happening with my legs. It started after I started the ropinirole and I thought it might be related to that. But it has only increased over time, especially in the last few days, were the pain in my arms has become nearly as strong as that in my legs though much less debilitating as I don't need to sit on my arms.

This brings me to my last comment. I am increasingly convinced that the most likely candidate for a diagnosis is fibromyalgia. My mom has it and many of my symptoms seem similar to her experience. It would figure that I would be one of the small percentage of males that develops a disease that most often afflicts women. Maybe its the result of being a militant feminist who opposes the traditional gender norms imposed by our society, LOL! Sorry, that was a really, really bad joke in poor taste. I hope I did not offend anyone. These days I need a little gallows humor to try to maintain some sense of hope. The widespread pain affecting multiple muscle groups and involving a combination of muscle and nerve pain seems like a good fit for fibromyalgia. Its one of the reasons I am going to be seeing a rheumatologist next. I will keep you all posted on how that goes.

I wish you all many painless, joy-filled days in your near future.


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