Limbs lice cement, total exhaustion

[eija]

I've been totally out today. Hands and feet have felt soo heavy and like full of lactic acid. Some slight aching from the hips down and a little in the upper arms and hands. And the exhaustion... Oh my. Told hubby it feels like not having slept in a week and having run three marathons in a row. I have slept but with nightmares and still tired when waking up.

The weather is better again but not hot so it should not be that. Can't figure out what's causing this? But I guess it comes wit the territory. I've also felt anxiousness and slight depression again.

How do you get out os a situation like this? Rest, of course, but...
I took an Oxazepam and now trying to sleep. Maybe it will help, maybe not. An early morning ahead...

[deeindiana]

Im going through this right now too and it sure isn't easy,  is it.  Although i feel this way most of the time,  it seems to flare up horribly ever couple of months.  Sorry to say but I've never found much relief.  Luckily all my children are grown now,  so when I get home from work I just sit!  I have recently been doing some strength training,  thinking that perhaps improving my muscle tone will help the heavy feeling and exhaustion.  But I also have fibro and my muscles don't seem to be getting any stronger.  So. .. afraid I have no advice! But know that you aren't alone and people here care.

[Maria3667]

Hi Eija,

Sorry to hear you're feeling like this. I know how you feel...

Have you looked into the side effects of Esomeprazol? That stuff wreaks havoc on my mind... (gives me nightmares too).

About heavy feelings in legs: I discovered it's likely due to an electrolyte balance. Taking 750 mg of magnesium daily & 99 mg potassium every other day certainly helps.

For mental health: 25 mg Seroquel (quetiapine), 6.000 mg fish oil, low dose dhea & testosterone.

Good luck!
Maria

[Judie P]

Hi, Eija,

I agree with the electrolyte imbalances.  Unfortunately, we cannot run to the doctor to get our levels constantly checked.  Wish there was some over the counter tests we could do!  I usually feel less heavy in the legs when I even eat an avocado.  Give it a try, you have nothing to lose.  Love and hugs, SM

[SJSman]

Eija,

This wouldn't be the first thing a person would think of, however, a pain medicine - a reasonably strong one - would likely pick you up, given that you have Sjogren's.

You are describing a condition that I am very familiar with, and a stronger pain medicine such as Tramadol can pull a Sjoggie up and out of that horrendous swamp in a fairly dramatic manner.

Surprisingly, Tramadol is quite effective in treating Sjogrens-type depression as well - it both treats pain and can give you a gentle and natural feeling mood-lift, and with few side effects for most people.

Of course, everyone's body is different so no one medicine works for everyone.

Two additional thoughts - as one person pointed out above, Oxazepam likely causes the exact situation in a Sjogren's person that you are describing if you take enough of it regularly.  Oxazepam is chemically similar to Valium, right?  I suspect that Oxazepam is not the big problem though, because you are describing a classic Sjogren's set of horrid symptoms.

The other thought is to ask yourself if you are doing too much and maybe need to slow down?

Good luck.  Maybe one of the previous responses have the key for you. 

[eija]

Thanks, everyone. As I wrote, I took an Oxamin tablet (it's a sedative and I took it to sleep, after these nasty symptoms, so it was not the cause) and went to bed. Woke up a few hours later with a nasty migraine So my symptoms may very well have been because of the oncoming migraine - or the weather change: Tonight it started  pouring!

I hate being a living barometer

I did some googling about electrolytes and indeed, those symptoms do fit pretty well, too. As for Esomeprazol, I haven't taken it now in a week or so but yes, it may have some nasty side-effects. I guess my mood problems and nightmares are just that my depression is worsening again. Grrr. Didn't expect that until in the autumn!

Deeindiana - fibro here, too. It's so difficult knowing what comes from which illness. Indeed fibro too can cause weakness. I'm sorry to hear that it's a constant problem for you. I have it in some degree all the time, but not so often this bad.

Pain medicine... the problem is, that I'm in the middle of not having real pain medicines. I'm banned from Ibuprophein because of ulcer-like symptoms. For migraines I have Arcoxia (not available in the US) and then Panadol, which is Paracetamol. Neither of them is efficient at all, especially for migraines :/

I have a dr appointment in three weeks. It's a new doctor and I hate that, also there's no guarantee she'll be my dr the next time I need one. Sigh. But anyway, I'm going there because I really need something better for my migraines - but to march in and ask for Tramadol would not work, I can guarantee that  It might be that I need to see a neurologist, but they'd want to put me on preventive meds. I already tried betablockers so the next would be anticonvulsants and I really don't want to take them. So we'll see.

SJSman doing too much? Yeah, right. If I did any less I'd evaporate into no-existence. I'm retired (disability) and pretty much just sit on my backside all day long That does not mean, however, that I'm stress free. Sadly.

"Classic Sjögren's set of horrid symptoms". Indeed. Makes me worry if my Sjs is taking steps towards worsening...

Thank you again, all of you, for pitching in.

[SJSman]

Hi again,

My doctors want to put me on a medicine called "Topamax" for my migraines.  I don't know anything about it, however, I mention it simply because I have excellent doctors.

This is complex and not worth a long Forum explanation, however, I am experiencing a several months-long, constant pre-cluster-migraine aura/feeling in my head.  It never goes away, and it only fringes into a cluster migraine occasionally and then never full blown, but bad enough.  I have a history of many years of horrid and terrible cluster-migraines, but had a (bad - not recommended) medication-induced remission from them for the past five years.

The point here is I am balking at taking the Topamax until I see if this pre-cluster-migraine aura explodes in full cluster headaches again.  I have a very bad feeling about this several-month's long, continuous, pre-migraine-aura-thing, and have never heard of such a condition.   

I know what you mean about hardly being able to do less, and laughed at your evaporation remark!   

Yes, neither Tramadol or gabapentin does anything for migraines.  The much-stronger pain meds do work, however, one cannot take enough of them to manage migraines with any kind of remotely normal lifestyle because of the overwhelming side effects at the required dosages - you have no migraines but you are also not conscious.

My migraines are called "cluster-migraines".

Have you had a brain and neck MRI? I remember asking you this before but I do not make notes and have forgotten what you said.

[eija]

Topamax is exactly what the doctors would rx next for my migraines. It's actually an epilepsy medicine but for some reason works as a preventative for migraines. My daughter is on it, successfully, but I really don't want it. Another one they use is Triptyl (an antidepressant) but that one I'm not even considering because it's known to cause weight gain.

In general my migraines aren't so frequent these days, so I think I could do with just a good painkiller for them. I've never had a brain or a neck scan. I've had migraine type headaches ever since I was a kid. That also runs in my family, so all doctors just assume that's it. In Finland I think only a neurologist can order a brain MRI for some weird reason. I once went to a neurologist for my migraines but he just rx'd me betablockers for prevention. He also reminded me of the Hunchback of Notre Dame and spoke about me in third person plural ("now let's do this"). So that was not a good experience 

Your migraine, SJSman, sounds just awful, I'm so sorry for you. Hopefully they'll find the reason for it, or at least something to help it!

My saga goes on. All night I had trouble breathing because of a very congested nose. It continued through the day, and caused a feeling of hyper ventilation. I took an allergy med, no help. Then a nasal spray, it finally helped some. Now I feel an inner tremor again and my sternum hurts. Not a good feeling. Just hoping I won't have to go to the ER

I'm so sick of feeling sick and depressed

[Judie P]

Eija, I am seeing my nurse practitioner today to see if she is willing to do a CT Scan on my head.  I understand that sinus infections and teeth problems (abscess, cavities) can cause migraines as well.  I feel so sorry for you.  Hang in there, try to get your mind off of it (I know that is easier said than done).  My friend who has neuro sarcoidosis gave me some tips like that when I was feeling depressed and defeated today.  It could be sinus problems or teeth problems.  Love and hugs to you!  SM

[eija]

Thanks, Judie. I'm not sure sinuses are my problem. Of course might be, but I don't think so. My teeth smarted yesterday, but with sinus issues it's usually the back teeth, and mine were fine. The smarting teeth were more in the front. Also, I don't feel like having a cold or anything. Just horribly stuffy nose and more or less trouble breathing. Like a weight on my sternum.

All this gets better with allergy pills and a nasal spray. Not away but better.

Today again a migraine when I finally got up in the afternoon. I killed it right in the beginning with Arcoxia 90 mg (etoricoxib) and Panadol 1000 mg (paracetamol) and this time those meds actually helped.

BUT then I got the tremors again! My daughter and I were out eating and my left hand holding the fork was shaking so that it was clearly visible. So today I've been looking into side-effects of medicines...

My tremors for a couple of times now have been the worst after a migraine. And for the migraines I take Arcoxia. I can't find that tremors would be a side-effect from Arcoxia, but it is mentioned for Cymbalta. But I've been on Cymbalta for years, with no tremors. Can they be from Cymbalta anyway? I mean with Plaquenil, too, my side-effects started only after months on the medicine?

For Arcoxia I found that sometimes it can cause flu-like symptoms, shortness of breath, weakness and tiredness. So maybe I'm not having "allergies" - or actually am, just not because of pollen but the stupid medicine!?

I'd still like to have the device Dr Crusher in Star Trek had, which after a quick scan declared what ever was wrong with the patient!

[Deb 27]

Hi eija, are you feeling any better yet? Sorry about the "flare."  They can come out of no where sometimes.    I think you are sensitive to meds, like me, so it can be so tough. Fish oil really helps me, I take MaxiTears, it's enteric coated, so you don't really get any of the stomach side effects. I also find I have to take something to help me relax when I sleep. I take klonipin. I try not to take it every night b/c it's habit forming. I also get vivid dreams, mostly from the plaquenil. After some really bad vivid dreams and a bad sun reaction, I cut back on plaquenil and am having a flare.

Have you tried going gluten free or getting tested for some food sensitivities?? I had the IgG tests, not the IgE typical allergies. I don't know if those are available in your area. I had to pay out of pocket but found out I had sensitivities to  flour, soy, and a whole bunch of other foods. When I got off the wheat, my allergies/asthma got so much better. I was able to co me off the asthma meds. Sometimes I can cheat a little but when I go overboard, I feel it.

I get tremors that can come and go too. I have no idea why except some meds make them worse. Wellbutrin gave me bad tremors.

[Judie P]

Could the tremors be coming from weak muscles in the arms or neck, or shoulders?  Perhaps the meds make temporary muscle weakness, or tightness.  That would give a tremor.  I am the same way on medicines.  Right now I am taking doxycycline for infections, and within 20 minutes I wanted to vomit.  At least my doctor warned me of all the side effects she felt I would get!  LOL