I have been to three different pain specialists and my GP seems to fight everything they say. Now after four years having CRPS and having so many pain meds my GP has told me to just come off all the meds because she thinks that because I'm in so much pain still with the meds what's the point of me taking any at all.
She has not examined me for any additional pain I have got in different areas and always just sits and types on her computer. I have put on labour 150 lbs in four years and this is just crippling me especially as I had a knee replacement that set the CRPs off in the first place. All I get from her is that it's the meds that's doing it. !
I have come off the gabapenton and hydro morph and prednazone and Lidacain infusion weekly but what has this done for me apart from put me in so much pain. So much pain ! I can hardly get up out of a chair or walk at all.
Is this what she wanted for me to happen when I came off the meds .
What do I do now ?
I don't no how to deal with even more pain and the weight hasnt started coming off so what can I do or should I do .
Anyone got any ideas on what I should do. ?
Please help me
Written by
Chawner
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Why have you seen 3 different pain consultants in 4 years?
GPs usually take advice from your consultant as to course of treatments and meds as they are the ones that prescribe them. Sounds so far that is what she has done. GP is also first port of call when meds aren't working or maybe to increase or decrease.
The fact she has not examined you further is probably to your benefit. It may well cause you additional pain and she doesn't want to o that. In your case with so much pain already if you tell her there is more pain or in another place she will accept that. Patients usually know their own body.
I can see where she is coming from. If you aren't getting any relief from what tou are taking them why continue with them? You do seem to have had a fair amount of weight gain and yes together with difficulty in moving it all adds to difficulty in losing any weight.
There are many alternatives to pain relief - physio, acupunture, swimming,lost the rest for the moment. Have any of these been suggested? A referal to dietitian about what you eat?
Of course you will know that any meds you do come off, especially the stronger ones, will need to be done very slowly to avoid withdrawals.
You could say there is nothing to lose by coming off meds and everything to gain.
Of course if you arn't happy with your GP you can ask for a secon opinion. Always talk to ou current pain consultant too. Often they are so busy that it can be easier and quicker to prescribe another meds. But equally - getting some relief can be trial and eerror and take weeks, months and even years to get the right cocktail.
Hope some of this helps
P x
Gabapentin increases the appetite, so that I can understand and for me it did nothing anyway pain wise. The same goes for the Pednazone which I understand is a steroid and is prone to increase weight with long term usage. Losing weight is the biggest thing which will help you now, 10 stone 10 pounds is a whole size 12 (ish depending on height!) person you're carrying around with you. Time to ditch her and tell her to get her own life I think, don't you? All that strain will undeniably put a huge strain on your joints, causing you pain.
Think about signing up to Slimming World, that was the best thing I ever did for my health. In 6 months, I lost 1 1/2 stone and kept it off. The plan is easy to follow and believe me you NEVER go hungry, in fact I ate more on it and some wonderfully tasty and filling meals, than I have ever done before! Walking, moving about even if it's just light housework, helps too. See if your surgery can help with Healthy Living vouchers to begin with, I got 12 weeks paid for provided I lost weight, which it's guaranteed to happen!
What I should have said, is that her ADVICE seems to be dangerous, as in cold turkey. Are you sure that's what she meant?
you can survive this without meds, I have a neuro-receptor disorder which gives me instant immunity after one dose of any medication, it's how I got CRPS local worked on left hand but not on right, had no meds prescribed since Oct 11, but I certainly wouldn't advise going cold turkey. If that's what the GP is suggesting you need a new one
I can understand your fear. My former GP suggested that I had a condition where the more pain meds I take the more pain I will feel . Its like the pain is out of control regardless of the dosage of meds. He wanted me off everything yet he had no plan as to what I would do as I was going off the meds or if his plan did not work. My son is a pharmacist (chemist) with many years of medical background and even he said that was a crazy plan.
I changed GPs.
The GP I have now has seen me through all my pain and fear. She promised me that pain management would always be there for me. And no I did not have the medical condition my former GP was sure that I had. I got an increase in my dosage. That was the magic and I found an angel in my corner.
What I am suggesting is if your GP is not listening to you and not hearing your fear and the fact you feel lost and that you are in pain, then its time you found someone who will listen.
Chronic pain is the most under studied medical condition in North America, so I imagine that is the same where you live. Some GPs and specialists still think it is in our brain.
What is a fact is that depression and pain are cousins. They work on the same brain receptors or some such thing according to my GP. She has me on a antidepressant and that has even helped. At least I don't feel I am in a black hole every day and trying to dig out.
Start today with a promise to your self.
---You will learn everything you can about CRPS start with Google and if you don't have a computer ask your friends to help.
----Learn other ways to help with chronic pain. Buy a TENS. The little machines are worth their weight in gold. Check with your druggist they may have one to rent or check with your friends.
----Get out of the house even for a walk. Borrow a dog and walk abit. Dogs are great company and they don't care if you haven't combed your hair or brushed your teeth
---Read, knit, listen to loud rock and disco music and stand up and move. Even a little distraction will help.
----Your job right now is to take care of yourself.
Remember you are not alone. Talk to us, to people on the street, put on a smile. Smiles work, people will smile back.
Thank you for all your comments, much appreciated. I did not go off my meds cold turkey just a bit quicker than I have done before. It was controlled. I have seen a dietitian and I am a trained nutritionist also. I don't get hungry and I don't drink alcohol. My GP has been on a course for pain and now she thinks the pain Dr is wrong to keep me on the meds . I can't get into see the pain Dr and am really fed up with it all. I hate having CRPS and it's not going to ruin my life any more. I want to see how my body and I feel after being off the meds for a while before I decide if and what I'd like to take to help with my pain level. All the side effects that I was told by my GP were making things worse are all still there so they can't be side effects can they !! Oh well another day another pain...
Hi chawner, i was on so much medication for pain at one stage that i could hardly hold a conversation. I decided myself to cut down dramatically as there was no point in taking them if they weren't working. I am now on tramadol only morning and night and only take more in the day if i can't cope. Plus i take anti inflammatory meds. My pain is no worse than it was when i was taking a bucket full and my brain now works. I'm still in chronic pain all the time but have excepted that this is my life from now on. Yes it's hard most of the time but i know that there is no such thing out there that will get rid of every single bit of pain. I have had to learn to deal with it and have bad and good days but at least i can find something to do know to relieve the bordom now i have my brain back lol.
Lowlife you are the pain clinic's dream! Not for coming off all the meds but for accepting what you have now is what you have . Thank you for putting it so well - wish i could offer you a job!
Everyone remembers all to well how they used to be. What they used to do and finding it impossible to move on. In most cases there is a cocktail of drugs and therapies that will help to manage that pain - pain relief meds never pain killers. It is all about finding that level at which is can be managed and learning coping and pacing.
Thank you pat i just want a life like everyone else. I went out last night to an old work friends leaving do. We had 17 people at the table and i was standing up to eat my mealsome of the time as i cant sit for long. Had some funny looks from the other tables but my friends are used to me pacing and finding things to do. I even wash up after a meal at a friends house lol.
You should change your name from Lowlife then - mos dehinitely.
You can have a life if accept is isn't the 'old' one. New challenges and finding a way to eat is just one. David is exactly the same. Sitting is the worst position for him.
True friends will accept you for wht you are. others who don't aren't ones to bother with.
And you are welcome here to wash up any time you like!
When i first joined this site i was in a very dark place and never ever want to go back to feeling like that again. The first thing that came to mind was the word lowlife because that was how i felt at the time. Yes i should change my name but if i do you won't know who i am lol.
I would agree with what your GP says except for the fact you have to come off the pain meds. You have been on them for a long time so you must come off the meds slowly. Your have become used to the pain meds and the body will complain in unpredictable ways if you just stop.
It is known that pain meds in some cases can actually cause pain and make the pain worse.
can you tell a little about withdrawel and its effects.
What your GP has failed to discuss with you is what regime to put in place.
You are going to have to do your own research and start to educate yourself as what therapeutic regimes will help. The NHS is appalling bad when it comes to issue of developing skills to cope with the health disability you have. You have to consider putting your hand in your pocket and seeing what paid help you can get from Alexander Teachers, Yoga teachers, t'ai chi teachers ect.
The posture has a great deal of influence on how much pain and discomfort you experience. Muscle behaviour has a great deal of influence on the pain and discomfort you experience. Posture and muscle behaviour is something you can improve by finding the appropriate specialists. Unfortunately as far as I am aware they are not available on the NHS.
If you have any questions I will do my best to answer them.
God Love you Chawner as I am in a similar position where my GP has even suggested I have drug seeking behavior...I am sick to the back teeth with his unsympathetic outbursts almost and we have pretty loud rows over what I have found on the internet, ( which he loathes man lol )...I broke and fractured 4 vertebra in Lumbar Region...I don't even know the numbers today. This was as a 16 year old and I am now 44 years old today. I don't have to tell anyone the agonies I go through as we are all on the same boat. It is just that I take Dehydracodeine 60mg X2 twice a day along with Naproxen...But Jesus this past Year there has been nothing touching the pain and when I attended my GP he suggested I was using drug seeking behavior when I was sitting in his surgery wearing my slippers as I couldn't even tie my laces.
This New, well relatively new pain is in my legs now and right down into my feet. I was borderline Diabetic and went to my Podiatrist that suggested getting Pregabalin form my Doctor and she thought my leg pain was coming from my old back injury. I also had restless leg syndrom that has me sleeping on the 2 seater settee hanging my legs over the edge to tame them...this is absolutely terrible now and pins and Needles are also a regular visitor to my Groin, Legs and Feet...suffice to say my sex life is non-existant...Drug Seeking Behavior when I am a father of two sons aged 13 & 9 and a wife that is disabled. I am Primary Carer here and I am fed up to the teeth trying to manage pain and my busy life at the same time. He prescribed me Fuoxetine, Prozac 20mg and I have found absolutely nothing changed from I took them first...over a year ago now.
I fully understand Dehydracodeine is Morphine once it has gone through my Liver and I am addicted to them. But at almost 45 years of age I do not mind getting addicted to to it nor any other drug that would help my chronic pain. I really can see how folk simply end it all when they have Primary Carers and Doctors telling you certain drugs are not for you because of addiction possibilities...I am just Venting here and I read all of your posts and realize we are all fighting the same battles. But making me feel like a Junky inside surgery really embarrasses me and angers me. Should there not be more sympathetic Doctors at our Local GP's Offices.
I'm so sorry to hear about your pain. I live in the US in the state of Florida I have chronic and it would take me too long to list all the things that are wrong with me. I am 65 retired and I don't drive a car. I am more fortunate I know and a lot of other people in that I have a pension and Social Security. Here in the states it has become incredibly difficult to obtain pain medication. If you find a doctor to give you a prescription first of all is an obstacle then be even harder obstacle is dealing with a pharmacy that would fill it. I know that sounds insane to think that you get a prescription from a well known established physician, not a pill mill as you might of h are about here. The pharmacists are calling the shots here. You go in, they tell you that they don't have it in stock or they don't have the full amount which means you go to several different pharmacies who tell you the same thing or you get a partial which means that you must go to the Drs office, get another computerized script for the remainder, mind you the Drs office cannot even fax the Rx in, you need to give them another printed Rx for the remainder of the Rx. There are stories of people who have had painful surgeries and they are being denied these meds. There was a story recently on my local tv station of a woman who had a double mastectomy and she was denied by pharmacies for her meds. I understand that there are abusers but people that are good, working class folks are being denied in the United States now, it has become a nightmare. There has been an increase in Herion use they say here and again there are the reacrational drug abusers but there are genuine pain suffering people being denied prescriptions from Physicans that turn to street drugs. It's a horrible situation because nobody know really what are in these illegal substances.
If someone abused these legal medications and caused harm to another they should be prosecuted and rightly so. Of course if you are wealthy you don't have problems getting your medications here.
I want to live in a Democracy but I don't know my community nary anymore, government is controlling our lives.
Do you have the same problems in the UK?
Thank you for taking the time to read this, God Bless you all.
I would try another doctor if it were me...I am in a lot of pain also but being 68 I have decided to not spend the rest of my life on the sofa. I push myself to do things, even when they hurt..I'm not talking about rock climbing, I;m talking about everyday occurances, I'm talking about going to the flea market with a friend, going out to dinner, riding in the golf cart with my hubby, etc. Things that I enjoy except for the pain. Pain is the biggest part of my life, but I will not let it totally rule my life!! I would also check into alternative methods, there is a CD that is called 'Wholetones" and they have cd's that are supposed to help with pain and healing, have you tried acupuncture or doing water aerobics in a YMCA pool?? I read every thing i can , on different remedies for pain....I do know how you feel, i have days when i say "I cannot do this one more day"!!! and I mean it at the time...I have even prayed that if God wanted to 'take' me then he could because I just couldn't live with the pain any more....{ by the way, I am always glad later, that He didn't take me up on that idea.!!! lol ] Good Luck dear, don't give up......
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