dear gerry

all of what you said
actually you spoke and
wrote what i would
thank you for your Spirit

someone who cares

Hi all,

Thank you for replying to my thread and yes it has turned out to be a good question that no-one really brought up whether we just didn't think of it or maybe it's a bit taboo *but we do need to talk about the other side of our pain, how it affects your day to day living and the things that this pain stops us enjoying, our bodies have let us down.

I gather we all or most of us have a problem with what we see in the mirror, I take 600mg of Lyrica per day and I'm convinced it is this that has caused the increase in weight because it's not what I'm eating or the portion sizes and no matter how much I tried I couldnt lose an oz so thank you Rae for reassuring me and all those who read this thread.*
As for the short term memory, mine is completely useless, I have to write everything down on my iPad and I have one of those medicine boxes so I know if I've taken my meds and if not then I know why I'm in agony.
The constipation and bladder problems are an awful combination of the meds and the problems they cause.

Gerry do you have a cholesterol problem? Is this something you had before your back problems or is it a side effect of these awful but necessary meds.

I haven't experienced much lightheadedness that Yellow describes but I bet some of your meds or a combination of them is causing it. I'm taking 160mg of Cymbalta and I thankfully haven't noticed a problem with them but that doesn't mean that people wdon't, I read somewhere Cymbalta is an appetite suppressant and I've had some of this too but it's up and down, we had KFC as a treat for dinner this evening and do you think I could manage it, nope! Such a shame!

Mark, my heart goes out to you and Cleo with your DIL, she sounds like a strange character, it's your money and you should spend it how you see fit and they shouldn't think about inheritance, I think it's just selfish, life is for living here and now, it's not about keeping money for a greedy DIL and I've told my parents the same thing when anyone jokes about it. *Perhaps they are barely making ends meet at the moment and a limo might be seen as flaunting it a bit.*
I can also see where they are coming from with not wanting God in their house, where was God when they lost baby Lily? I think this will change overtime but it must be hard for you when it's now they need God the most. Please God all will go well on Sunday and Cleo will be back home to you soon enough, how does she cope not having a car to escape. Are your DIL parents around to help. I love to have my MIL around when things are going on but I still want my own Mam more, I think that's just human nature.

Thank you all for your replies and please God we can all eventually come off these meds and get on with more important things.

Love to all
God bless

Sinéad xxxx

Mark....I so agree with Jackie. Is it possible, they would rather not have parents/in-laws there at all? Maybe the question should be asked. How difficult this must be for Cleo to remain there as well.

God is there......whether you and Cleo are there or not. God will not leave. Of course, God always gives free will to call upon Him. Can only hope and pray for them.

Gerry

AND KNOCK!! I love that image, and dwell upon it whenever I meet someone new and am allowed to let them know I feel blessed, how are they? I can just see Christ at the door to their heart knocking, and I am ever excited by the uplift in their eyes when they recognize what I have said. How sad DIL and our son even before Lily was born would not allow Christ spoken in their home [for each was raised with a Christ focused home]. Even so, we pray.

Back to meds. I was on 1,800mg Lyrica per day when released from my neurosurgeon back to my pain doc specialist. He genuinely feared for my liver as I had been on such quantities of Lyrica for nearly two years under surgeons care since surgery had been so frequent in those early days of our seven year famine. Doc took me down off of Lyrica with a preference for Neurontin another nerve pain med which I ultimately weaned totally from among the opiates as well after SCS implantation.

I have been so glad to get away from the pain meds. Now on gout med..... something or other I have forgotten the name, and need to scope out the bottle. Gout. Ick. Amazing how it feels so like peripheral neuropathy with the undying burning of the feet and lower legs. He did allow as how were it not for the FACT my legs below the knees are stark numb, gout would feel so much worse. I am just amazed numb limbs which cannot feel penetration of glass can sense gout's burn. I am totally confused.

So, sign me confused,
And the limo? It was actually less costly than taking Super Shuttle, how about that? I used to ride limos all of the time for work. Hah!! Inheritance, Bah! I told my parents to spend it all on disposables and such, you know, eating out, having parties, enjoying themselves, cruises, and such. Precisely what they did until Dad came down with the Alzheimers curse.
But these kiddos, they are receiving a boatload of prayers Christ will touch them on the shoulder with responsibility as they take on parenthood,
Thus for all of you and these younguns, I pray,
Cleo will be well, for she is protected by Christ, and I am the sole one who is demonized as non-submissive,
I readily submit to Christ,
Mark56

Sinéad ....I had the cholesterol issues for years prior to any of these problems. Actually, my cholesterol has improved (in spite of my cutting the simvastatin in half due to all the articles about statins and PN) since I munch every evening on a container of dry multi-grain Cheerios, my cholesterol has improved. I think they might be right about their commercials regarding cholesterol. I have not changed my diet. In fact, my eating habits are not good. I do not have much of an appitite; but do eat and enjoy sweets.

I was given a script for Cymbalta a few years ago by my former Pain Specialist . I really felt terrible. Very tired; just wanted to lay down. I was getting depressed because of lack of ambition. Also, really affected memory quite a bit. Only stayed with Cymbalta for a short time. My sister-in-law came down with shingles this past November. One of the meds she was given was Cymbalta. Her mermory was really affected. My husband took her to a new doctor who took her off all meds. Eventually, he wanted to put her back on the Cymbalta because she complained of some pain and the doctor thought she might have some depression. I had asked my husband to please ask the doctor to hold off on the Cymbalta. Thank God he did. Joyce is back to her old self. I'm sure the Cymbalta alone was not the total cause of her previous memory problem; but could only relate what had happened to me. Everyone is different and if the Cymbalta is helping you; that's what counts.

Prayers coming your way.

Gerry

p.s. Husband's father was from County Cork, Ireland

If that is what Cymbalta does to memory, a person in my line of work cannot afford to suffer memory lapse [It was horrible when portions of my memory were erased by the concussion from the wreck], so I am GLAD you mentioned memory!

You see, Sinéad? THIS is precisely WHY your thread was needed!!! We gotta share and learn. Goodness gracious sakes alive [my dear Grandma R used to say that, hands on hips] we have needed such a thread for a good little while!! Before you know it, MrsD or Chemar will boost you to Sticky Status... then you will be FAMOUS!!!

May I have your autograph before it becomes too expensive to collect?
I am not so much "tongue in cheek" here as recognizing the good you have done,
Yup,
I reckon you could say we are all blessed,
Oh, my, did I write something off point?
Prayin,
Mark56

I have been on meds since Feb '05. I was on Neurontin and then changed to Lyrica. I was also taking Zydol, Protium, Amitriptyline, Tylex, Neurofen, lido deem patches. Lignocaine and Ketamine infusions.

In Sept '08 I met with my pain Consultant. Immediately he took me off Lyrica. I had gone from a confident, strong, assertive woman to a bumbling mess. I thought at first my memory going was my age!!!! But have since learned that it was the Lyrica causing the memory loss. Oh my it was so debilitating. Bad enough having to deal with all the pain of my back problem but
Then having to put up with the memory loss was worse!!!! Holding a conversation was just impossible. Just as well I had to be retired early from work as I doubt I would have been able to hold down my job with all those meds.

As regards my headaches. I'm told they are 'overuse' of medication migraine!!!!!
Well what can I say. Guilty. But then without them I can't function. At the minute I'm on Zydol, Baclofen, Protium, lidoderm patches two per day plus Neurofen. I stopped the Amitrypteline as I felt they definitely weren't helping with the eye distortion. But the meds definitely have had a terrible effect on me over the past seven years.

I have my stim plus the meds to keep me going. I can't go without the meds but my mind is a little clearer. Well as clear as it can be for my age too, which doesn't help

Jackie

This is my first post as a new person on this site. I relate very much with what you say. You are not alone.

Welcome Inthesameboat!!! This is become a family of wondrous people who reach out in support, each for the other. Our founder and riotously funny Rae will no doubt be along and wrap her arms of gentle love completely around you win welcome! As for me, it is a glory to see you here, and I hope you will find this forum to be fulfilling as I have over the years I have participated here!

Thank you for sharing on the medications thread lovingly started by our dear Sinéad, a delightful and deeply in pain young lady from across the pond in Ireland. She had the insight to think "well, there should be something said about what these meds do to our bodies." She is so right.

A hearty grouphug for you in welcome!
Prayin,
Mark56

I was on atenolol for several years for migraine prophylaxis. I can't say it helped one iota in that respect, but it was required by our ins. co. (another case of insurance companies playing doctor) in order for them to pay for the Maxalt I needed as an abortive.

Now I find (or am trying to make the link) that the atenolol may indeed have been the cause of my peripheral neuropathy (PN), so apparently it WAS doing something... just not what it was supposed to do.

Many of the meds I've been prescribed I simply don't/won't take. It's a constant weighing of benefit vs. virtual incapacitation for 1-2 days from what I call medication "hangover".

I've been given something for anxiety that I'm just plain afraid of because it may have caused my wife's worsening tinnitus.

I went through the gammut of anti-depressants, anti-seizures, and anti-what-have-yous for chronic pain, all to no avail, and all robbing me of any/everything but existence (zombification to some of you).

Having PN, I also have a scrip for gabapentin, which fortunately, I was able to talk the neurologist into writing for much less than he wanted/tried. This is another zombifying concoction for some people (myself included) with some nasty side effects. I had to take it a few times, but fortunately, I responded well to R-Lipoic Acid, and haven't needed the gabapentin since taking the RLA daily.

A lot of people fear acetaminophen (Tylenol, Panadol, paracetamol) because of its long-term effect on the liver. They don't have to. An inexpensive anti-oxidant supplement - N-Acetyl Cisteine can protect the liver for those who (need to) take meds containing acetaminophen.

I was on asacol for a time for (misdiagnosed) Crohn's Disease. All it did was exacerbate my symptoms, and did permanent damage so now I cannot take NSAIDs at ALL (save one, and I still have to be very careful).

I've learned, despite having faith/trust in my doctors (it's taken me a long time to assemble my team) to research everything on my own before having any prescriptions filled. On occasion, I've had to call back and discuss alternatives, which I can usually make a case for. No meds have been perfect, but some are less harmful/risky than others. Ironic that medicine often boils down to the lesser of evils rather than the better of solutions (though they'd like to equate them).

My wife was on a statin for a time for high cholesterol, and those meds can be very scary indeed. I found online that niacin can lower cholesterol as well as statins (and while not without some risks/SEs) without many of the worst risks/effects. She started on Niaspan - a prescription sustained release niacin, until we found we could get the exact same formulation OTC for less than 1/10 the cost. Her cholesterol is doing fine. SHe's about to have it tested again in anticipation of lowering the dosage.

That's all I'm thinking of at the moment; some of these things have had an effect on my memory as well, particularly with my vocabulary. I was never a Wm F. Buckley (or even close) but I could often understand what he was talking about (with a dictionary handy )

Oh, yeah... I put my foot down at Dopamax/Stupamax, and got dropped by a doctor for doing so. I know it's helped some people, but the risk wasn't worth it for me.

Doc