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grandmaD: turtle here

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Songbird

I have not had prickles but more a kind of burning feeling in the skin.  The prickles or burning skin sensations are known medically as paraesthesia.  The worst was during my "crash" in 2008 when I had a patch of burning skin at the top of my right leg near the hip joint.  You could not see anything there - no redness or rash - but it was very painful, and took months to go away.  I've had it again at various times and in other places, but nowhere near as bad.  I never found anything to help it, but I didn't try the hot wet towel so that could be worth a try.

 

It is frustrating that when you finally feel good you then end up overdoing it and paying for it afterwards!  That happens to me too but with fatigue and brain fog, not so much headaches.  It's good that you can tolerate vitamin C.  I'm a big believer in the powers of vitamin C.  Keep on turtling on, and I'll keep on turtling on too!

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LexAnger

GrandmaD, just to check on you. Now I'm bed ridden again with more time on the forum--and pray for both of us!

Hope you got some relief from the pin and prickles lately. They are one of the most torturous sxs of all and I mam having

 lots those since the MRI and then the MSG reactions. But still trying hard to keep the faith they will lesson over time, as they did during my first 6 months off lex.

 

love,

lex

 

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grandmaD
On 4/11/2018 at 11:45 AM, LexAnger said:

Hi grandmad, 

Try this trick for the prickles on back. Wet a big towel with hot water, place it on your back covering as much as possible your spine, and the entire area that feels the principle. Leave it there for a while like 10 min see if the prickles lesson.

Lex

Thanks for the advice about the hot wet towel.  I normally get them worse in bed and by then I couldn't be bothered getting up to do the hot wet towel and I never think to do it in advance!  Also I don't want to get the bed wet!  Where do you normally lie to do it? 

 

I thought the heat from being in bed set it off, so thought it interesting you used heat for it so based on that I got a hot wheat pack and heated it up and put that on my back and found it did help!

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grandmaD
On 4/11/2018 at 8:49 PM, Songbird said:

I have not had prickles but more a kind of burning feeling in the skin.  The prickles or burning skin sensations are known medically as paraesthesia. 

I have the burning thing on my legs, especially painful around ankles feet and going to some toes.  I'm worried about having nerve damage, but so far I still have feeling there.  It is excruciating at bedtime when trying to sleep.  I must try Lex's wet towel trick for that.  Years ago Brassmonkey recommended cold wet sox and I did that and that helped.

 

It is frustrating that when you finally feel good you then end up overdoing it and paying for it afterwards!  That happens to me too but with fatigue and brain fog, not so much headaches. 

Yes, very frustrating and makes you angry and then that doesn't help either, I'm sure!  I'm becoming more alert more often now and this has led me to realise it is any extra things I do (as you said - overdoing it).  I now have to decide to continue for more years doing "nothing" but my usual routine or do other stuff and simply decide I will pay for it afterwards!

 

 

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grandmaD
3 hours ago, LexAnger said:

GrandmaD, just to check on you. Now I'm bed ridden again with more time on the forum--and pray for both of us!

Hope you got some relief from the pin and prickles lately. They are one of the most torturous sxs of all and I mam having

 lots those since the MRI and then the MSG reactions. But still trying hard to keep the faith they will lesson over time, as they did during my first 6 months off lex.

 

love,

lex

 

Oh Lex, this is just so horrendous and so unfair!  I really want to come and visit you and give you a big hug and wish I could TAKE IT ALL AWAY!!!  It is a pain in the bum, especially when you have now experienced other things causing you to go backwards that were probably needless!  I have just discovered that the more rest I get, the better I can cope, so while it seems such a waste of our life being bedridden, I can now tell myself it is helping me!  Press on fellow turtle.

 

Hold on to your faith, that is all we have left and you don't want to lose that!  We ran into an 88 year old lady the other day WHO STILL GOES SKY DIVING!  So there is hope for us yet, right????

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grandmaD
4 hours ago, LexAnger said:

GrandmaD, just to check on you. Now I'm bed ridden again with more time on the forum--and pray for both of us!

Hope you got some relief from the pin and prickles lately. They are one of the most torturous sxs of all and I mam having

 lots those since the MRI and then the MSG reactions. But still trying hard to keep the faith they will lesson over time, as they did during my first 6 months off lex.

 

love,

lex

 

Thanks Lex for checking on me, you are such a sweetie, especially in your own suffering.  It makes me so mad seeing what people have to go through on here.  Do you have family or friends to help take care of you??

 

Thanks, the prickles and pins and needles and shooting pains are heaps better.  It is just the head issues that are back again!  I am never in a position where everything is good or even fair because it is always one thing or another.  It is hard to keep strong and a battle fighting off the thoughts that this will never improve, I'll be like this forever and so on. 

 

I was so sure that the lower I got the better I would be, however I have just experienced the opposite of getting worse and worse with each passing year and the lower I go, there is still no letting up.

 

It is absolutely ridiculous what a tiny bit of this poison can still do.  I guess my age has a lot to do with it also as you don't heal very quickly the older you get.  I even thought of jumping off before this but when I saw how much worse you got, even from such A TINY DOSE, it frightened me to do that!

 

So here, I am, still suffering and still plodding along with no end in sight and having to wait even longer now instead of dropping at the 8 week mark because I'm still not stabilised.  That makes me mad also, having to go slower.  On the other hand I try and console myself that it may not be w/d but just all the added stress I mentioned above.

 

It is at this point in tapering (after 6 months of tapering) that for last 3 years I have had to stop and hold for 6 months.  That is also in the back of my mind, wondering if I'm going to have to do that again and the thought of that makes me furious!

 

My plan from now on is to take it easy, do my mid morning rests, stick to routine and do as little as possible (which i normally do anyway - I'm so thankful for a wonderful hubby who pays the bills, does the shopping and helps with housework and cooking when necessary).  If I improve over the next few weeks that will show it isn't w/d but was all the other stressors.

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LexAnger

im crying over reading your post,. GrandMa! It makes me heartbroken thinking the mental and physical daily torture and desperation we are going though for these many years. No one would ever understand how much it takes a human being to endure all these and in doubt every day and minute about our future surviving. 

 

I live alone lone all these years, only meet up with my son over weekends for lunch or dinner while I try my best to pretend I was not that miserable. I can't be seen by others for longer than an hour or so even for the best time so I tried not having anyone around. Somehow I feel living alone is better in some way as I don't feel stressed by letting ppl see me. My life has been super simple with minimal house work or cooking so I somehow managed feeding myself so far. Your words of care and love totally melt my heart and wet my eyes. I too want so much to be with you and give you hugs everyday for some comfort. Thank you so much my dear friend! I have so much love to you too!

 

i didn't make it clear in my other post to your thread about the warm wet towel for pins and needles . I use warm water to wet the towel just to avoid too much stimulate from the coldness. But I don't use hot water, only warm water. So my skin will not react too much to the initial touch. The towel gets cool quickly that's when the cooling effect starts. So you are right that cool towel helps not the hot one. I usually lying on my stomach when I put the towel on my back where my worst needling pain locates. Another technique is knitting or sewing which I only tried once. This one actually takes away all types sxs probably by the distraction. The last time I alternated a pair of jean for my son, all my sxs were gone during the work. I feel it's the full attention I gave to the work did the trick.carmie also mentioned this and it works for her too.

 

looking back now after all types of experience and lessons, I feel the key of surviving this ordeal  is NOT to sensitize the CNS. my case is a great example how much trouble and challenge you will face once your System is super senentive. It seems everything now works like lexapro causing severe reaction to my sensitized system. I needed only to take care of lexapro before, now I don't know what are the hidden bombs until I hit them. I don't know if my sensitivity was caused mainly by WD or lexapro updose, but as long as you don't have drug reaction issue, going slow sounds the safer way to avoid sensitizing your symptoms. As long as no drug reaction, Taperin fast doesn't win us any time for final healing, most often it just causes  more suffering. So try not to think much about the time needed to be off, it's not the most important thing in this battle.

 

Another thing I learned after stopping, that it seems the root cause of all symptoms including physical ones, are the same--stress and anxiety even you don't feel anxious or stressed, and the stressors of all types can ramp everything up. So your plan of taking it easy, relax and rest, distract are the best handling. 

 

Having you you during this journey is such a great privilege !  Thanks for giving me strength during my war against this madness! 

i will pray more regularly for both of us!

 

lots love and big hugs!

lex

 

 

 

 

 

 

 

 

 

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LexAnger

Oh about the head sxs, yes, me exactly the same. All my sxs are in the brain and head and back. When they lesson in the head and only on my back, I would feel livable. That's how different for sxs to be on brain/head or other parts of the body. It's more like if sxs on other parts of body, they are more like true physical, while in head, they are both physical and something else ( mental, cognitive etc) 

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grandmaD

 

UPDATE 8 WEEKS

 I'm just getting round to doing my 8 week update when I would normally taper.  

I've just gone downhill so bad since my daughter's wedding and still not recovered:

Week 5 saw some improvement, but I went downhill again for the next 3 weeks. 

I think I may have been starting to stabilise but then was my daughter’s wedding (week 6)  This meant a trip away so we took our van, thinking at least I'd be in the same bed each night (as this can upset my bodyworks).

After the wedding all the usual head issues returned much worse, including the pressure heads, banging head, sore heads and I got a headache which lasted 10 days again.  We stayed for 5 days during which time we tried to catch up with rellies every day.  It is times like this when I know I should not visit as we did as I already had the stress/anxiety symptoms from the wedding and all the head issues.  However, being in town was a good opportunity to catch up with others and I felt very torn and just hoped I “could do it.”

 

Following that, we went off in our van and visited friends every day for a week so this probably prevented the headache from getting better.  It also made the anxiety issues worse, including adrenalin surges, dizziness, breathlessness, insomnia (4 hours several nights in a row) and pulse to 115bpm each day for that week.  Which also proves to me that even visiting people (just sitting having a cup of tea or lunch) ramps it up.  I’ve known for a while now that just talking makes me heaps worse and can cause adrenalin surges, dizzy and breathlessness.  Also, the inner vibrations and tremors went sky high.  Again, we went all that way to visit them (because brother in law now has Parkinsons Disease) and I would have felt like I was being rude to stay in the van each day!  We have stayed with them before in their home, which was probably better as I could go and lie down whenever I wanted.

 

*A note on Parkinsons.  He is now the 3rd family member, along with another friend to get this disease and all of them were on cholesterol tablets.  I researched this and found it is a side effect.  Anyone reading this and being advised to go on cholesterol tablets would do well to research it before making that decision.  Our friend and his wife were both advised to go on cholesterol tablets.  The husband did and the wife refused.  He died twenty years ago from Parkinsons and the wife is still alive!

 

It has become quite clear to me now that I just cannot cope with anything over and above my usual routine (pretty much the same one I’ve had for almost 7 years now). 

 

I got worse and worse.  Then the muscle spasms hit me and I saw for sure how I react with GREAT FEAR and panic when this happens because of being laid up for weeks previous times, and at one point it was 2 months bad and 4 months all up.  Next day another spasm sent me to (reluctantly) take Voltarin (strong anti-inflammatory).   I was still fighting hard to resist the fear and panic and practising the “Dare Response” book where he talks about “accepting” it and not fighting it!  VERY HARD!  I’ve practiced this with anxiety but not with the spasms!  I got thru that day without any more spasms that day - a miracle in itself!!  Today I’m feeling okay and more confident but did resort to codeine p/k yesterday because the headache came back bad again.

 

The headache seems to be a permanent sort of ache on the right side.  Always there and sore. It goes from mild to moderate to severe.  It is very debilitating and I have noticed exertion makes it worse.  I’ve noticed rest helps.  I’ve had to go back to mid morning rests as well as my usual afternoon rest and I noticed the headache improved after my mid morning rest, (and codeine) along with the pressure head, “dead head” feeling and incredible fatigue.

 

Apart from that one fairly good week 3 weeks ago, the last time I had a decent week before that was 9 weeks ago.  This taper has seen only 1 good day a week whereas my average would normally be 2.  I will wait another week and hope things improve...

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LexAnger

You are in my prayer grandma . I'm in extreme pain too, I know how you feel.

 

love, lex

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grandmaD

Lex, you couldn’t have put it any better! The daily one problem or another.  A couple might improve while another couple get worse.  Definitely torture is a very good word and it goes on and on relentlessly for years.  I don’t know how I have gone on for this long.  I do know I am very fed up and I feel trapped.  You cannot plan for tomorrow and going out is out of the question unless you pay for it dearly!

 

I’m glad you are still in contact with your son.  I can understand it being less stressful living on your own.  I doubt I would have survived without my hubby as there have been plenty of times I would have gone without meals/food and since I cannot drive because of my bad cognitive issues, I still am not able to shop or pay bills, etc.  I’m so pleased you have been able to feed yourself so far.

I am so sorry about your extreme pain, it is so distressing to see people have to go through all this.  I continue to pray for you too, God bless you x

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grandmaD

Lex I appreciate your suggestions for “distraction” however I cannot do any of these crafts.  In fact, the patchwork I was cutting up/sewing back in 2014 just before my gall surgery, is still sitting in the corner of the family room!  At times I have looked at it but I do not have the energy or the incentive to do anything.  I can do puzzles to occupy my mind and these are easy to pick up and put down whenever.

I’m sure you are quite right NOT TO DO ANYTHING TO SENSITISE the CNS.  This MUST BE OUR AIM because there are times we do things that we don’t even realise is upsetting it!  Like you said, we don’t know the hidden “bombs until we hit them (or they hit us!)

Plenty of times I wonder if my CNS is sensitive to the drug, like you and would dearly love to just CT, but after what you went through, I am too scared!  I am down to 1/8th tablet and surely it isn’t doing anything and surely you would think must not have any affect anymore, but who knows? 

I am now only doing .5 drops instead of 1.0, yet I have been getting worse and worse since week 5 of this taper and don’t understand unless it is all the added stress, and this is very discouraging.  That is when it hits you mentally.  I had 2 very bad days which I don’t recognise at the time, but when I come out of it realise it must be deep depression.

You’re right there with the stress and anxiety.  I thought I coped pretty well with the wedding,  visiting, etc and since then have been crap for 5 weeks!  There are times I can detect the anxiety ramping up but there are times I don’t notice it until bedtime.

I think all I can do is to continue to relax as much as possible and rest as much as possible, especially keeping up with the mid morning rests as long as the afternoon ones.

It has been a blessing to know you too on this journey!  It does give us comfort and strength during this horrendous torture!  Thank you for your prayers, I continue to pray for you too.  Much love and big hug x

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grandmaD

Week 9/week 2 of HOLD

Another horrendous week.  It feels like things are getting worse, and I’m doing downhill still, however there has been a slight improvement in headaches, head pressure and head banging sensation.  Worse is the nerve problem and muscle stiffness and feeling very vulnerable like I might “break”.  I have felt this before in the past, which is some slight comfort, knowing it might pass!  

 

 The headaches I had for 10 days in a row have improved.  After reading on LexAnger’s thread about a person with a couch issuing toxic gas – I removed a mattress topper that was blue gel foam.  The next day, after 14 days of this particular headache, it was gone!

 

Now I have other bad head issues with head vibes worse and a very sore head every day on the right side, sort of like a headache in one spot, not all over.  As long as I do NOTHING, it is okay but just going for a walk can make it worse.  This continues to be a permanent symptom.  There are times it moves to the top of my head and then across to the left side!

 

I can’t know for sure, but I have an achey shoulder, which at times goes up my neck, causing a stiff neck and into the right side of my head.  This seems to come and go, and I just don’t understand why at times it seems much better and other times much worse!

 

Worse week for vibrations/inner tremor and tingling.   I think are my nerves on fire, super sensitive and is very difficult to cope with.  I believe this could be affecting my muscles as I’m having lots of muscle issues – weak, tight, painful, stiff and the return of the itchies and prickles in a big way.

 

Then, I got the back muscle spasms again for another 3 days which sent me reeling again.  Again, I tried hard to not panic and continue with my mid morning rests and of course the relaxation and breathing exercises.  I am very pleased to say so far no more spasms, but still issues with hip, back and right shoulder muscles aching.

 

Rapid pulse is still in the 100’s each day and I’m sure this is from the anxiety stirring up the central nervous system, as I’ve had the adrenalin surges again each morning along with feeling dizzy and daily breathlessness.

 

Incredible fatigue again for much of this week.  Will continue to hold for the next 2 weeks at least…

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