RLS or something else? Part 2

For everything and anything else not covered in the other RLS/WED sections.
ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Tue Apr 26, 2016 12:17 am

I hope it works.
Ann - Take what you need, leave the rest

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SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Wed Apr 27, 2016 1:09 pm

Sometimes I just have to laugh because this whole situation is so absurd. The new theory is that I've been having thyroid problems for a while. The thyroid problems caused the initial GI tract issues, which caused a magnesium deficiency, which caused (on its own or in combination with the thyroid issue itself) the RLS-like symptoms. The thyroid problems also caused the small fiber neuropathy, and what I'm currently dealing with is a combination of neuropathy symptoms and thyroid symptoms. I thought my thyroid was found to be fine a few months ago, but the rheumatologist I saw yesterday said that the right tests were not run, so he's running them plus a bunch of other tests.

Anyway, I started Neurontin two days ago, and my neuropathy pain is 80 to 90% better already. It's too soon to definitely say that the Neurontin is helping because my pain varies so much from day to day, but yesterday was the least pain I've had in months (other than when I was on a course of steroids). Hopefully we can stop whatever is causing the neuropathy to worsen and I won't end up disabled from this, which is what the last neurologist told me was going to happen.

ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Fri Apr 29, 2016 3:07 am

Yeesh. I can't imagine how frustrating this must be. Thankfully the neurontin is helping.
Ann - Take what you need, leave the rest



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badnights
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Re: RLS or something else? Part 2

Postby badnights » Sun May 01, 2016 9:41 am

snappy, I think your poor neurologist doesn't know what to do for you, not becuase he's ignorant but because medical science doesn't have much to offer for you. Yoga is not such a ridiculous suggestion as it may seem, because it involves a lot of balance work. It will not grow new nerves for you, but it will improve your proprioception, which will help you compensate for the damaged nerves and lost sensation. (An analogy would be doing thinking exercises like learning a new language or playing chess to stave off Alzheimer's - the mental activities don't actually stop the plaques of Alzheimer's from developing, but they generate new connections in other parts of the brain that can take over the functions of the parts the plaques are destroying.)

Re the 24-hour urine test, if your problem involves circadian imbalances in a hormone, that test might not pick it up, since it averages everything over 24 hr. Your symptoms get worse during the day, so it's something to consider, but I would imagine they would get worse anyway just from moving around, being in pain and getting tired.

You might want to look for a good functional medicine doctor. Keep your neurologist and GP at the same time. They will all give you different insights. The FM doctor might give you diet changes and other concrete things you can do to improve your body's general health, which will improve its ability to fight disease.

I hope the gabapentin is still helping. And I hope the thyroid tests show something fixable that explains everything that's been happening!
Beth - Wishing you all restful sleep tonight
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SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Wed May 04, 2016 11:33 am

Thanks, badnights. I know that yoga would be helpful, but he told me not to do any exercises if I'm hurting. And since I've been hurting all the time...sigh. Now that I'm on Neurontin, the pain is greatly reduced and I can start exercising. I'm already doing physical therapy for my neck and in a few weeks I will start physical therapy for gait and balance. The idea is for my physical therapist (who is awesome) to design a customized exercise routine that I can perform on a daily basis to help with my balance.

yawny
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Re: RLS or something else? Part 2

Postby yawny » Wed May 04, 2016 4:19 pm

I've been reading your story and wishing you had more answers for what is happening. I've been in this position before and it is beyond frustrating and scary. I'm not sure this will help you at all but I had to at least suggest it...I know of a doctor in Seattle that may be able to help, or point you toward someone that could help. He's no longer practicing but retired and doing consultations. I found him years ago for my mother who had a health situation where no one could figure out what was happening. I saw a magazine article on this doctor who was solving difficult cases of people in pain and with symptoms that didn't match up with anything specific. He figured it out. Also, his bedside manner was very kind and he was extremely sharp.

I'm thinking if he's not a good match for you, maybe he could refer you to someone that solves hard cases since that was his practice. Possibly a Skype consultation so you don't have to travel. I wish you the very best.

Dr Andrew J Holman
http://www.pacificrheumatology.com/

SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Wed May 18, 2016 2:58 pm

yawny, thanks for your email. I reached out to Dr. Holman two weeks ago at his old and current company email addresses but have received no response. But your suggestion gave me the idea to finding an independent expert to review my case, and I ended up finding a web site that offers such a service. Their doctors have reviewed my case and made several good suggestions for additional tests, specialists, etc. So I really appreciate your idea because it triggered me to go in a really good direction in terms of getting help.

I have been on Neurontin for a few weeks and it's been a big help with the pain. I have also recently started taking fish oil, magnesium, and B complex vitamins. Not sure what is making the difference or if it's a coincidence, but I've had a remission of sorts since last Friday. I have minimal leg pain and a little bit of other mild pain, and my energy is so much better.

I have had a bunch more tests, bloodwork and stool sample tests, and everything has been negative except for a confirmation that my inflammation markers are high. I did find out that while my fasting glucose is fine (75), my hemoglobin A1c (HbA1c) is at the high end of normal and I'm just a tick away from being pre-diabetic. So I guess I'm pre-pre-diabetic. :) In any case I have to cut back on eating carbs and lose some weight to prevent progression to being pre-diabetic.

I'll keep posting updates as this evolves. Hopefully I can get some answers and share them with you in case someone else starts out with RLS-like symptoms and progresses into the range of symptoms I've been experiencing.

ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Thu May 19, 2016 5:50 am

Congrats to you for persevering. And, so glad to here you are feeling better. Hopefully you'll have a complete answer soon. The pre-pre-diabetic thing can be reversed. My husband was in the same place - he actually was prescribed metformin to help get his weight down (he's only 25-30 pounds overweight) and blood sugar down. It really helped along with him being more careful with diet and exercising more. Not sure how many doctors do this.
Ann - Take what you need, leave the rest



Managing Your RLS



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SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Mon May 30, 2016 1:10 pm

I might finally have an answer for all my health issues. My latest random symptom is that I have been getting sore throats that just come and go, but what makes them really odd is that my throat is only sore on the right side. I was Googling for that last night and came across several references to that in a forum for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). I immediately discounted CFS because I have always thought of that as just fatigue, when I have so many more symptoms, but I'd never heard of ME before. I Googled for that and found out that it's similar to CFS (or the same, depending on who you ask). Then I read more about it and everything fell into place. ME/CFS is the first diagnosis I've run across that explains every single one of my symptoms. It would explain why I experienced RLS-like symptoms for months. It would explain the hyperreflexia, which the small fiber neuropathy diagnosis does not address. It would explain why some days I can barely walk to the mailbox and other days I feel pretty good. It explains the pain, the GI issues, the headaches, the neck pain, the inflammation...as far as I can tell it explains everything.

I am going to do some more research into what CFS is all about, but I'm pretty sure this is the final answer. Unfortunately there's no test for CFS and not much in the way of treatment, but at least I know that pushing myself is a bad idea and that I need to conserve my energy and to get myself healthier (especially lose weight) to take strain off my system.

ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Mon May 30, 2016 10:13 pm

That must feel very good to know what direction to go in. I am not happy it's CFS, but very satisfied that you know and can start to work with it.

I have a mentor/friend/colleague with CFS - he's worked hard with yoga, massages, diet changes, etc. to feel much better. We used to ride our bikes to meet each other in Chicago for lunch - then one day he couldn't even ride the bike at all. He is riding again now and just got back from a 2 month trip to Thailand where he did quite a bit daily. It did take time - including 2-3 years before a diagnosis - but he's now well enough in his retirement that he can actually enjoy it.
Ann - Take what you need, leave the rest



Managing Your RLS



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Rustsmith
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Re: RLS or something else? Part 2

Postby Rustsmith » Mon May 30, 2016 11:00 pm

I agree with Ann that you must feel a lot better about your situation now that you have a good idea of what has been causing your problems. Even for these chronic conditions (CFS, RLS, MS, ...) where the treatments do not completely fix everything, just having an idea of what you can and cannot expect helps improve your mental outlook on life. As much of a problem as CFS may be, at least it wasn't something even worse like the MS that you suspected at one time.
Steve

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

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badnights
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Re: RLS or something else? Part 2

Postby badnights » Wed Jun 01, 2016 8:26 am

Bad news and good news, isn't it? It's always nicer to know than not know, and even though I wouldn't wish CFS on anyone (or RLS!), still it's better to have than something degenerative like MS. Now finally you can stop leaking energy trying to chase down the reason, and can begin to learn and adapt to minimize the problem. I only met one person with CFS but I have heard stories similar to Ann's - once you learn your body's signals and can adapt to the level of energy available for the day, it becomes manageable, and you feel some quality return to your life. I hope this is what happens for you, and in the shortest time possible.
Beth - Wishing you all restful sleep tonight
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SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Sun Jun 19, 2016 6:14 pm

Thanks for all of your messages about my likely CFS diagnosis. I really thought it was the answer. It turns out that, surprise, surprise, the real answer may be more complicated. Last week I had to do a liquid and Jello diet for almost 48 hours to prep for a colonoscopy. On the second day I felt so good! I should have been even weaker and woozier than usual. But my energy was great and my pain was completely gone! I finally ate solid food around 5 pm and in two to three hours later my pain was back, and it's been back ever since. My energy has also tanked again. So now I am thinking that the root cause of all this nonsense is a food sensitivity. This would explain the GI issues (obviously) but it could also explain the high inflammation levels, the neuropathy, CFS, and everything else. The gastroenterologist did biopsies during the colonoscopy and upper endoscopy, so he is having those checked for signs of celiac and other issues. Now I'm wondering if a food sensitivity would explain why my symptoms mostly go away when I'm asleep.

ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Mon Jun 20, 2016 7:38 pm

This stuff is so complex - so many things it could be and very hard to know where to focus.

Do you have increased liver enzymes? It's indicative of several auto-immunes, but almost always with celiac. When people stop eating gluten, they often get a very fast response. Smart of your gastro to to a biopsy.
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: RLS or something else? Part 2

Postby badnights » Tue Jun 21, 2016 8:51 am

Wow! That would be something a person can work with. Can you see a nutritionist and develop a plan for testing by elimination and re-introduction? Even if you have celiac, you might want to go the distance and make sure there are not sensitivities on top of that.

To have such a dramatic response to stopping food surely is important, but it's odd that this all came on - iirc - rather suddenly, and evolved rapidly. I don't know if food issues normally do that, maybe you can ask a doctor about that? If it's not normal, then there might still be some undiscovered underlying change in your body that triggered all this.

But I hope you're on the road to a solution now!
Beth - Wishing you all restful sleep tonight
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