Odd new symptom freaking me out

[wearywriter]

Hey guys, I can't find an answer to this that makes sense and my GP is zero help so I figured this is the best place to ask...

Quick background - diagnosed with ME, Fibro, and OI, been ill for about 4 years. The past 6 months have been a pretty much nonstop crash that was triggered by an iron infusion for low ferritin levels (5) - I've had infusions before without that happening so I'm not sure why it did, except perhaps that the nurse ran the infusion very fast and didn't monitor my BP which was done carefully in previous infusions. I didn't go for the next infusions, have been taking oral iron tablets but I'm not sure they're doing anything.

My current symptoms have mostly been major fatigue, drowsiness, muscle/joint aches and pains, brain fog, nausea, and a lot of palpitations/autonomic feeling blah-ness. Hard to describe but I'm sure you guys get it. The crash has been pretty unrelenting and I've mostly been in bed for quite a while, though I try and go out for errands with my family maybe once or twice a week which generally leads to a big increase in pain and wanting to lie down on the floor in public places, so I've been avoiding it. (which sucks, as a side note, I'm really lonely and depressed and bored)

OKAY so all of that seemed pretty standard for ME/fibro/OI so whatever, what can you do. Then, about a week ago I started getting this new symptom that's been scaring me a bit.

Basically, it happens most night in bed as I'm trying to go to sleep. I get waves of 'pins and needles' in my hands and feet, only there, and I notice that as it's happening my heart starts pounding. I can suddenly feel my heartbeat and it speeds up. After about 10 seconds it 'waves' away, and then the wave comes again about 30 seconds later. The sensation washes over my hands and feet, then goes again. This seems to happen over and over and I've generally then gone and taken phenergan to try and knock myself out so I'm not lying there worrying about it/trying to figure it out.

I've looked up the pins and needles symptom, or paresthesia I guess and I see it is common with fibro, but it's bizarre to me that it's only happening at that time and in such an odd manner, with the pounding heart and wave-effect of coming and going. I do get pins and needles easily during the day if i lean on a limb etc but otherwise I mostly experience pain, not tingling/numbness.

The only culprit I can think of is that I recently tapered off of Citalopram (I was put on it because the GP I saw figured my ME/fibro was obviously all just depression/anxiety, and it didn't actually help my mood or my physical symptoms so I weaned myself off it after being on for a few years). I've come off of citalopram and fluoxetine in the past and have never had this experience, and I'm not getting any other withdrawal symptoms (I tapered slowly to avoid that) or 'brain zap' sensations, so it still seems a bit bizarre...?

The other possible cause that I begrudgingly could accept is anxiety, as I know that could cause a pounding/increased heartrate and paresthesia, but again the way it's presenting is sort of weird, and I can't seem to make it stop by meditating/deep breathing/etc like I would normally control anxiety symptoms.

If it helps, I'm taking the Iron supplement (which has some added vitamins), Vitamin D as I had a deficiency, an Adrenal Balance supplement, and Clonazepam (which has the panic attacks I used to get under control, but I'm aiming to wean off of next because I am physically dependent, have a tolerance, and don't want to be on it forever).

Don't want to ramble on so I'll stop there but any ideas/suggestions would be greatly appreciated! I try not to get anxious about the random symptoms that pop up with this ridiculous illness but last night this one made me so nervous that I ended up getting trapped in a horrible night terror state for half an hour while trying to go to sleep, so if I could get some understanding of it I think it'd be helpful - and my GP is happy to stick 'anxiety' on every single symptom I mention.

 

[nandixon]

@wearywriter, You might want to see a cardiologist and get checked for heart rhythm problems (arrhythmias), etc. You may need to wear a Holter monitor for a number of days to figure out what's going on.

 

[wearywriter]

@wearywriter, You might want to see a cardiologist and get checked for heart rhythm problems (arrhythmias), etc. You may need to wear a Holter monitor for a number of days to figure out what's going on.

Thanks so much for your reply. That's a bit scary. That would be financially tricky, so it might have to wait until I get back to the UK (trying to move back home from South Africa) and then attempt to convince new GP there to give me a referral... Hoping they won't just brush it off completely as well. I could set up an appointment privately here but I don't have insurance so I can't afford to, sigh.

I did have an ECG about 8 months ago which came back normal, if that counts for anything. But I honestly have no idea what's going on with my body at this point.

 

[nandixon]

@wearywriter, A regular ECG/EKG will often miss arrhythmia problems. The Holter device is basically an easily wearable ECG monitor that you wear all the time so that it can detect the arrhythmias when they happen. If necessary, treatment can be relatively simple using a catheter ablation, for example. I had one done for an atrial flutter that would happen every time I would lie down and so was interfering with my sleep. (The ablation was actually only about 50% successful but taking 200 mg of CoQ10 corrected the rest of it.) Good luck!

 

[jesse's mom]

@wearywriter I used to have these same symptoms and have the same diagnosis as you do. For me it had more to do with the position of my head when I am sleeping.

I was a stomach and side sleeper all my life. When I made myself learn to sleep on my back with hard neck support all these symptoms got much better. It is easy to try, it just might help. (I use old feather pillows that have lost their fluff. Rolled up towels work in a pinch.)

I take Lyrica for my fibro and nerve pain. It helps me a lot. It is not without side effects, but for me the help with the pain and anxiety about the pain it is worth it.

A word about adding supplements my rule is to start with very small doses over a long time. Low and slow. I keep a journal to record the dosages and anything I notice about them.

 

[Judee]

Since money is tight and until you can get the EKG or holter test you could try a pulse ox device that has a plethysmograph similar to this one. It's how we found out that my mom was having arrhythmias which the doctor then confirmed with the holter test. (Although we have one more like this with a single line but this is a child's model so don't buy that.)

I used to get something a little like this but I called it "spiral down" where if I laid on my right side my whole body suddenly went tingly and I felt like I was going to faint (like my strength was spiraling down a drain). That improved when I went off daily Iodine and DHEA supplements and the extra thyoid med my doctor had me on.

For the iron, I've read where a lot of people who had been taking supplements said taking blackstrap molasses worked better for absorption and their test numbers went up when they used that instead. It has to be "blackstrap" though because the other kind isn't that high in iron.

The other thing would be to check medication side effects. I like drugs.com because it has long lists of even the rare side effects but you could find your own site. I also like askapatient.com because you can see if others are having similar effects.

Edit: I get frustrated when medical people always want to say were having a panic attack.

Panic means fear and if I'm not feeling fear when I am having these symptoms then it isn't a panic attack. Now I know you said you have to take a medication to help you to sleep so you don't keep thinking about it but it doesn't sound like the situation initially started out with fear even though you are now nervous about what is happening in your body and who wouldn't be. Hope this long paragraph makes sense.

 

[Shoshana]

Hi, @wearywriter
I am sorry you are having this bad symptom, and of course it also causes more worry and more sleep disruptions, and more sufferings and difficulties, in addition to all of the already difficult ME symptoms.

I would not dismiss it as anxiety, without further investigating it. And doctors shouldn't either.

It could be arrhythmias, irregular heart rhythms, some of which are not dangerous. I agree that the Holter monitor would be best, and it would shouw which type of arrythmias, IF you have them. But I understand you have to wait on that.

I also wonder if it could be a medication side effect, instead, even if you have not had the effect in the past, from the same med.

It might also be neither of those. And it might be positional. I would try to use different body positions, and different pillows and supports, cushions, to see if you can find a better way to sleep, that might not cause that.

Just giving ideas. And support.

 

[valentinelynx]

I agree with those who say to get your heart checked out soon, to be safe.

I'm leaning towards the citalopram withdrawal, myself. Coming off of those SSRI's can be awful, with weird symptoms. My first time quitting Effexor (a SNRI but has similar withdrawal issues) I had no problem doing it "cold turkey". The second time was a different story: profound exhaustion, malaise, anxiety and shooting pains down my spine, like jolts. I don't recall if I had palpitations or rapid heart beat but given the anxiety, I might have.

If you still have any citalopram around you might try taking a part of a tablet to see if it alleviates your symptoms. Or ask your doctor for a prescription for some to try it. If taking it does alleviate your symptoms, then you can restart it at the lowest dose you can without your symptoms recurring and then slowly wean down. Citalopram has a long half-life (it takes 24-48 hours to eliminate half of the dose from your bloodstream, and about a week to eliminate most of it) so you have to go slow. When you drop the dose, stay on the new dose for at least a week before dropping further. For example: Week 1-40 mg, Week 2-30 mg, Week 3-20 mg, Week 4-15 mg, Week 5-10 mg, Week 6-7.5 mg, Week 7-5 mg, Week 8-Off. It's obviously hard to split a pill into such small quantities, but you can crush it and divide it into fairly equal amounts.

It may take longer than this. If you get symptoms again at any dose, go back up to the previous dose, or a dose in-between until the symptoms go away, then try again with less of a decrease next time. It took me almost a year to get off of Effexor the second time around.

Maybe it's nothing to do with the citalopram, but it's worth a try?

 

[PatJ]

Clonazepam (which has the panic attacks I used to get under control, but I'm aiming to wean off of next because I am physically dependent, have a tolerance, and don't want to be on it forever).

I don't know what's going on with your other symptoms, but these tips from members on PR might help when you decide to start weaning off Clonazepam similar:

From @Mary
I have had problems with excess glutamate, particularly acute when withdrawing from lorazepam. I discovered that high dose vitamin C can be very helpful with excess glutamate: https://www.ncbi.nlm.nih.gov/pubmed/25701025 I ended up taking a couple thousand milligrams every couple of hours and when I would wake up at night too, and it helped calm me down. Relora also helped a little.

From @Wayne
I took clonazepam for over ten years, and noticed that my feeling of waking up with a "hangover" became more pronounced over time. I've also read that studies show long-term use of benzodiazapines increases the risk of developing dementia and/or other brain disorders.

It was fairly difficult for me to wean myself off of it, but managed to do it over a one-year + time period. The hardest part was the very last tiny bit of it I was taking. A few months after quitting it completely, I discovered micro-current therapy [alpha-stim; http://forums.phoenixrising.me/index.php?threads/going-off-clonazepam.8565/page-2#post-161856], and was able to get past the on edge feeling I was still experiencing. I wish I had discovered it sooner, as I believe it would have helped me wean off of clonazepam, and quite possibly would have been effective enough to not have to get on it to begin with.

And this site lists supplements that might help with benzo withdrawal. Note that one of supplements is niacin, which should be avoided if you have low blood pressure, especially at the doses mentioned in that article.

 

[Seven7]

The other possible cause that I begrudgingly could accept is anxiety, as I know that could cause a pounding/increased heartrate and paresthesia, but again the way it's presenting is sort of weird, and I can't seem to make it stop by meditating/deep breathing/etc like I would normally control anxiety symptoms.

I have heart Rythm issue due to my POTs, an electrophysiologyst is the type to cardio specialists on this issues. I got a heart rate monitor I think I wore it for 7 or 30 days?! Can’t remember now. And then they put me on beta blocker. But that kind of thing has to be look at since it can be serious.
The pins and needles for me went away with Alpha Lipoic Acid + acetyl cartinine, but it can be sign of a bad thing like a compressed nerve, ... the electropgysiologyts can do a muscle conviction test if he suspect issues.
I didn’t get mine figure out but since I cannot tolerate the symptom ( my burning is pretty severe) so I do the
Supplement while they figure mine out. I do not get any more pins meddles or burning while on the supplement but do the reaserch on it since there is a lot of controversy on ALA.

 

[Loomcgoo]

Wearywriter

You've just described the symptoms similar to mine (they are new and distressing), although I have constant pin and needles. When they go from pins and needles to bubbling under the skin, like you were sitting in a jacuzzi I get heart palpitations and feel oxygen hungry. Sometimes it can get painful and I have found a tens machine helps, Capsaicin cream, heavy blankets on my legs help me to sleep (otherwise the sensation makes me sick), warm bath with magnesium salts. Mindfulness helps me to cope and hold on when symptoms are really bad, going with the symptoms and not making a story about them and being curious about the sensation they produce can help stop the anxiety from making it worse. I do find having periods of lying still during the day (no stimuli apart from a talking book, or the sound of rain etc) seems to be helping - although I find it hard to stick to.

I have been regularly going back to my doctor for months and they are convinced it's CFS/FM, but I also have the anxiety depression label and was told to just distract. That it's about symptom management, nothing can be done. It has completely disrupted my life and when it's bad I just want it to stop, it interferes with concentration and ability to have a conversation - never mind dealing with my other CFS symptoms. It is really distressing.

Although, there have been times it has been easing and I think there may have been times it has completely disappeared. Someone close to me said how different I was. I'm doing everything I know helps in relation to CFS and have been taking branched-chained amino acids as well as cod liver oil, as well as other supplements. It is easing a bit and I have come across it in the FM and CFS literature. Although, that doesn't stop it from being scary, I do hope with management it will reduce.

Get your heart checked out if you can. I have been dismissed on that point, although will hopefully see neurology. Use the things you know helps you with your CFS and do more of it, it may help to reduce your experience.

I've had it for 8 months and nothing bad has actually happened, apart from the experience being so hard to live with. I've gone through the menopause and do think there may be a hormonal element to it. Flax seeds are a good source of estrogen and you can get a herbal remedy to increase progesterone if you think there may be a hormonal element to it.

When the symptoms really hit me, I feel the anxiety is part of the symptoms as opposed to me actually being anxious. The anxiety I feel when symptoms hit is different from my worry about the future, or the symptoms never going away.

Hopefully it'll be short lived for you. I find symptoms can sometimes go as quickly as they have come, I live in the hope these new symptoms will stop. Hope you get some answers.

 

[wearywriter]

I don't have the energy at the moment to reply to everyone properly but thank you so much for all of the responses - they've been really helpful and given me a few possible avenues to consider. I do think it could be the citalopram, but am going to keep tracking/speak to the doctor just in case they're helpful/ and I'll report back if I get any answers or solutions! Really is crazy all of the symptoms that come up. I want to respond properly individually so hopefully body will play ball soon...

 

[wearywriter]

I just thought I'd update here in case anyone experiences something similar or is interested..

I talked about these symptoms with my doctor/homeopath (I suppose he's what you'd call a functional medicine dr in the US), and we started doing weekly b12 injections. I've had 3 so far and will have one more on Monday, and since the first one I haven't had any of those nightly freaky rushes of pins and needles anymore. I should note that time has progressed since tapering off the citalopram so it still could have been connected to that - but I do think it could be the b12 shots given that I had the symptom the night before my appointment and haven't had it happen since then (3 weeks ago). My b12 was last tested last year and was in the normal range but on the lower end so he felt it could be helpful, especially given my consistent low ferritin (despite taking oral iron often over the years) and history of eating disorder. Was hoping it would have other effects like, ya know, increasing my energy, but nothing so far on that front in terms of ME/CFS symptoms. But I am happy not to be having the weird limb-tingle symptom anymore, so that's a positive.

Thanks again for all of your suggestions and help!

 

[Shoshana]

That is very good for us to read your update, @wearywriter
so thank you for sharing that with us.
We do care about you, plus we learn about possible options in our own situations, in addition.

I am glad you are taking good care of yourself, and that you let us know how you are doing!

 

[BeADocToGoTo1]

Since supplementing B12 had such a positive impact, it might be worthwhile to dig a little deeper. Why was there a B12 deficiency? Are there any other nutrient deficiencies.

Heart issues, parasthesia, pain, fatigue, nauseau, etc. I had for a long time. They were in hindsight all due to nutrient deficiencies (not just B12) causing issues with mitochondrial and metabolic pathways functioning. Digging deeper I had malabsorption and was not getting all my nutrients from food. Digging deeper the cause of malabsorption was SIBO, Candida overgrowth and exocrine pancreatic insufficiency (EPI). Of course there can be many reasons for nutrient deficiencies or malabsorption, but it might be worthwhile to check a few things upstream. In the UK there is also the Genova Diagnostics nutrient testing available (e.g. FMV ONE).

Since chronic excess sugar/carb in my diet and for my body was a big upstream factor, it may be worthwhile to take a hard and honest look at everything you eat and drink. Even though I always thought I ate healthily (no sodas, very little fast food, no alcohol, no smoking, "healthy" options on restaurant menus, etc.) today's food supply can be a tough one to navigate. Keeping a food diary for a week could be enlightening.

 

[wearywriter]

Since supplementing B12 had such a positive impact, it might be worthwhile to dig a little deeper. Why was there a B12 deficiency? Are there any other nutrient deficiencies.

Heart issues, parasthesia, pain, fatigue, nauseau, etc. I had for a long time. They were in hindsight all due to nutrient deficiencies (not just B12) causing issues with mitochondrial and metabolic pathways functioning. Digging deeper I had malabsorption and was not getting all my nutrients from food. Digging deeper the cause of malabsorption was SIBO, Candida overgrowth and exocrine pancreatic insufficiency (EPI). Of course there can be many reasons for nutrient deficiencies or malabsorption, but it might be worthwhile to check a few things upstream. In the UK there is also the Genova Diagnostics nutrient testing available (e.g. FMV ONE).

Since chronic excess sugar/carb in my diet and for my body was a big upstream factor, it may be worthwhile to take a hard and honest look at everything you eat and drink. Even though I always thought I ate healthily (no sodas, very little fast food, no alcohol, no smoking, "healthy" options on restaurant menus, etc.) today's food supply can be a tough one to navigate. Keeping a food diary for a week could be enlightening.

Thank you for your input! My limitation right now when it comes to digging deeper is financial - I'm living in South Africa at the moment but am British, and should be moving back to the UK in the coming months. Im hoping I can find a decent GP who'll help me dig deeper with some more blood work, or hopefully will find myself in a stronger financial situation so I can pay to get some private testing done like the Genova Diagnostics one you mentioned. The B12 is an odd one as I didn't come up as deficient, but I know the ranges can often be inaccurate when it comes to peoples' specific needs.

I do think there's a malabsorption problem because for the past few years I've consistently had very low ferritin (my haemoglobin seems to stay in the low-normal range but ferritin doesn't go up). I had iron infusions and had some symptom improvement when it came to obvious iron symptoms like dizziness and heart palpitations, but after the infusions my levels plummeted quickly again despite taking iron tablets, switching from a vegetarian diet to one that includes meat, being mindful of iron intake/avoiding having iron with calcium all those things. So it's a bit of a mystery - the GPs always blame my periods (I have adenomyosis so I have bad cramps and a couple days of very heavy bleeding) but I'm not sure that's it completely because I'm fairly sure consistent iron intake would make up for those 2 days a month. I also have migraines towards the end of and after my period which has been linked with low ferritin, but I'm a bit worried that an NHS GP will brush it off as my haemoglobin tends to be ok and I doubt they're as keen on sending people off for multiple infusions as they are in the private sector here where they make $$ each time.

I also hear you on the diet. That's a really tricky area for me to navigate as I struggled with anorexia for many years and am currently working on maintaining a healthy weight and not restrict food, and as soon as I start up the 'I need to cut down sugar/carbs, etc...' train of thought, my head can quickly spiral. But I know nutrition can make a major difference in ME and fibro, as I've seen on these forums, so I think I also need to face up to the fact that I DO eat a lot of carb-heavy foods and not enough of the good stuff, partly due to long-term weight gain efforts and fighting against the eating disorder, but also because being ill means my husband is largely in charge of food in our home and he's no chef, so there's a lot of pasta based meals goin' down, ha.

Anyway, I've rambled on but thank you again, you've given me lots to think about. I really hope I can find some form of help back in the UK, but I am pretty worried about the whole thing thanks to the psych brigade, especially since my history of ED and depression/anxiety (which will be what pops up first on the GPs screen after 7 years living here in South Africa and my physical health deteriorating) will probably put mental health stuff right at the forefront of their minds instead of any desire to investigate what's really going on and why I'm so unwell. Sigh.

 

[LouiseLouise]

Some people with ME/CFS seem to have an unusual and bad reaction to Vitamin D. I do. I don't get symptoms like yours exactly, but my ME/CFS is much worse overall.

There are a number of studies pointing out links to oxidative stress with ME/CFS. Here is one:

https://www.meassociation.org.uk/wp...ECFS-implicate-‘Redox’-imbalance-31.01.19.pdf

I wonder if an iron infusion triggers a potentially damaging amount of oxidative stress in people who already have a chronic and excess amount. I don't know if you have access to it, but the heme form of iron in supplement form is supposed to be well absorbed orally. I understand it is the form of iron found in liver or red meat. Maybe taking it in supplement form would be easier for your body to handle than a big bolus of iron.

 

[BeADocToGoTo1]

Especially since you are in S. Africa it might be worthwhile having a comprehensive stool test done to check for any parasites, worms, pathogens, good and bad bacteria levels.