CRPS and My Virtual World

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6 years 3 months ago #20730 by Peter
Replied by Peter on topic CRPS and My Virtual World
Really sorry to hear you have had such a bat trot with Lyrica. The unfortunate thing about that drug, is that it doesn't seem to have much of a middle road. It is either a great help, or it is devastating. Our other Moderator Don suffered terribly with this drug too. He said that it made him have violent thoughts or something. Maybe he might elaborate on that when he gets on line. But he had to give it up too.

Kim, my advice to you when it comes to drugs, is you need to educate yourself as much as you can and then take full control over what goes past your lips.

And I don't mean that as some form of medical advice. And nor do I mean that you should just dig your heals in the ground and refuse to take any drug suggested by a doctor. That would be stupid!
I have done this and it has saved me a lot of heartache. I ended up in hospital twice, because I blindly took drugs the doctors gave me and didn't ask any questions. Well the second trip to hospital was because of Serotonin Syndrome and I was very ill. This was an overdose of serotonin in my system, which was brought about by the drugs I was on.

Now when a doctor wants to try me out on something new, they know that I will pull out as soon as the 'bad side effect' symptoms start. There are side effects that will go away and there are side effects that YOU KNOW will put you in hospital. You need to be vigilant and be able to recognise them early, but you need to be able to relay this to your health professional.

What I am saying to you is. You need to make sure that you tell 'ALL' your health professionals that you have had some very serious drug reactions and that you need to start off on any new drug/s, low dose and slow increase. Plus you must tell them that if you start to get any 'dangerous' reactions that you feel will be bad, then you need to stop the drug quickly. So you must ask them for a plan of action to get you off of that drug ASAP.

Now the other thing you need to do is ask the doctors, how do you get back in touch with them if you get bad reactions and need advice/help. Pin them down. When they simply say, just make another appointment, but you know that you could wait months to see them, simply pull them up straight away and tell them that simply is not good enough. You could be in hospital or worse if you have to wait that long.

I mean, a bit of common sense is what is required here. Most doctors won't be that foolish, but some are so overworked they just don't think before they speak. So, just politely stand your ground and ask them for some 'real help' not just brush you off.

If the doctor, no matter who she or he is, do not connect with you during this process, then go find one who will!!

As for the needles in the fingers. Man I can tell you I had tears in my eyes too. And I have suffered some pretty bad pain all my life from the age of just 3, so I was quite use to it. But I was NOT ready for needles up the tips of my fingers. Brrrrrrrrrrrrr!


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
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6 years 3 months ago #20731 by Kim
Replied by Kim on topic CRPS and My Virtual World
i understand what you are saying peter,but im being told the neruo stim is it, i have had apparently all the drugs for crps.
With adverse effects lyrica,endep,gabapenten, and endone even using the pain med ladder that they use for cancer suffers but to no avail.
I came to a conclusion that this is my life,i also have had a Serotonin episode never want that again,about the lyrica i had massive changes in mood being aggressive to everyone and paranoid about my own family when they put me on 300mg right off the bat.
this time it was going from 25mg to 50 mg i told the doctor i had this issue before but he didn't want to hear it he said its a low dose you will be fine. endep makes me see things. gabapentin does nothing i am allergic to endone and epalim i take for my epilepsy but doesn't help with pain.
im just find it hard to get a doctor to listen to me and do what im asking not what they thinnk if you know what i mean peter.
and by the way thank you for taking the time to talk to me
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6 years 3 months ago #20732 by grappers
Replied by grappers on topic CRPS and My Virtual World
Hi Peter and Kim,
In regards to Lyrica, if it was just violent thoughts it would not have been too bad, the thoughts were actions, and you don't realise you are being that way, the slightest annoyance would set me off into violent episodes, doors weren't safe, walls were in our house as they are double bring, if I had anything in my hand I would throw it, the memory fog made these episode worse, as losing an object I had just point down would send me into rage. Other side effects were present as well, like nausea, severe headaches, trembling, loss of space perception, by which I could not judge distances, my elbows took a beating from walking through doorways and such, misjudge steps and the brain fog.
Gabapentin a similar drug has the same effect, as do antidepressants and or antipsychotic medications, but these give me problem with passing urine, antispasmodics stop it all together as well as bowel motions.
One would say it's funny how differently people are affected by medications, for those of who suffer these side effects, it's no laughing matter, it's dangerous and could lead to loss of life to a severe reaction or suicide, more care need to be done in monitoring patients who are prone to intolerances, for me now it is a medic alert tag, my drug intolerances are to so many, they have to ring before administering any drug.

As for mindfulness being taught at pain clinics, you are not alone, that is one area in which I can not complete, meditation and the sorts, I can't clear the thoughts to relax, it's the same with hypnosis they have tried many times and failed, but the other tools like pacing and planning and setting goals I use all the time, I went in sceptical to the first couple of classes I thought this is basic stuff, but the biggest shift came with acceptance, I often go back to the information sheets handed out, just refresh I am on the right path, even though I never mastered mindfulness, the rest of the material comes in handy.

Don
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6 years 3 months ago #20733 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hi Kim

Peter and the others here always offer good insights and advice and I agree with peter the these clinics just haven't got for their heads around CRPS pain. My own experience of a pain clinic was I lasted half a day, they were just asking me to do things that were impossible and not working with me, it was just ludicrous and only made me more frustrated and increased my feelings of being misunderstood and my pain levels not been taken seriously.

Mindfulness is impossible when you have really seriously severe pain but what does help me is alternated nostril breathing because it calms me down if I am starting to get panicky and I breathe through those really intense shooting pains I get that are followed by deep throbbing that makes me want to bang my head on the floor. However seeing as you are into the course, it could be worth seeing it out and take what can be useful and discard what is not appropriate for you and crps, don't follow what they tell you religiously if you know it will work against your best interests.

if you don't feel your crps is understood by the medical people you see you will not feel supported. It took me 4 years to find a PM who understood crps fully. I was told to cease to all medications that were doing zero for my pain. Eventually as my original post in this topic tells I got a spinal cord stimulator which helps a lot, I still get pain and with crps you need to accept you will probably never be free of pain but the SCS is a fantastic thing to have.
Emotionally are you seeing a good psychologist still? It took me a few years of sessions to finally feel I was Okay mentally.
Keep in touch and I hope your tests do not upset you too much.

Josie

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6 years 3 months ago - 6 years 3 months ago #20736 by Kim
Replied by Kim on topic CRPS and My Virtual World
thanks josie reading your post makes me feel like im not alone.
I got good and bad news (just my luck) the nerve conduction study come back negative But i had this pain in my hands for around 6 months now,so my gp i just have seen said its most likely 99 percent sure its crps in my hands. This has just done my head in, i lost the plot yelling at my wife cause she was talking about someone's car and my daughter wanted to know what was for dinner.
Bundaberg is known for bad medical help weather it be small or big,i wake up every morning with my hands distorted and pain like you would not beleave the thing is josie,peter,don this is what i have tried but people are not listening except for you guys.

1.drug trail lyrica,gabapentin,Endep,endone i had all allergic reactions
2. Neruo stim x3 due to migration of leads -helps with 35 percent of pain sometimes eg laying in bed is when it works best.
3.Pain clinic

is this it for me ?
i really don't think i can handle any more pain on top what i already suffer.
im very close to the end of my tether if people can understand that,that way my pain is gone.

Much love for all your peoples advice.
kim
Last edit: 6 years 3 months ago by Kim.

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6 years 3 months ago #20737 by Peter
Replied by Peter on topic CRPS and My Virtual World
Kim, we all understand the desire to 'check out and stop the pain permanently,' but in the end all that does is punish our loved ones.

Sure you're having a bad day and the family may have gotten on your nerves, but you must always realise that no one truly knows what you suffer, unless they suffer the same. So try to be kind to your family if you can, because they just don't have a clue as to what you are going through. I find the best thing to do when I feel like I want to bite someone's head off, I just turn around and walk off for a few minutes to calm down. it's better for everyone in the end.

Most of us have been where you are now. Not enough help or support from the health system. Feeling despair because your frustration has boiled over. You feel there is just no help out there and that the world doesn't give a toss. Well, there is a lot you can do to help your situation and most of that is to do with you.

As Don said earlier, acceptance is probably the best thing you can do for yourself. If you are still haggling over a cure or even a partial cure, then you are jacking up your stress levels, exponentially. Once you do that, you send your pain levels through the roof and they stay there until you can lower the stress levels.

Mate, if you haven't been to a multi-disciplinary pain clinic yet, you need to get the GP to refer you to one. They can teach you some skills on how to self manage your pain condition. But most of all, you need to start looking for a doctor who can help with CRPS and you might get this info from the pain team.

We don't have a clinical services directory. If we did, I would have given you that info already. So if there are any members out there who know of good doctors who are in Kim's area, please feel free to post them here, or simply send Kim a private message with the information.


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)

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