Introduce Yourself Here.....

  • Mary
  • Mary's Avatar Topic Author
  • Offline
  • Platinum Boarder
  • Platinum Boarder
More
3 years 11 months ago #21184 by Mary
Replied by Mary on topic Introduce Yourself Here.....
Hi Carissa,

If you are not happy with your doctor, it is important to find someone who you are happy with. As the others have said, a multidisciplinary pain clinic is the best place to be, but you also need a supportive and understanding GP.

Fear is the biggest factor with chronic pain. If you can overcome the fear, then you can concentrate on using other strategies to manage your pain. While the fear is still there, it causes a lot of stress which in turn makes your pain level higher. I know this from personal experience. i had reached a point at one stage where if I couldn't park my car in front of a shop I needed to go to, I didn't go in. I have no idea what I thought would happen to me, but I was afraid.

I was referred to a good psychologist who was familiar with chronic pain and helped me to relax and also helped me realise that I could actually do things without stirring my pain levels up as long as I paced myself. I also participated in a community self-management program run by our local Arthritis Association and that also helped me enormously. Next, I found a physiotherapist who also knew about chronic pain and made sure that what she asked of me was basically minuscule to start with. However, it did get me moving.

I do take Lyrica (an anti-convulsant medication used for neuropathic pain) which helps to damp down the nerve endings.

All of the above can be accessed via a pain clinic at a major public hospital, but there are often long waiting lists. This depends on which state you live in, so it may pay you to enquire.

I hope that the 3 of us have been of some help to you. Please let us know how you are going.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
The following user(s) said Thank You: Carissa

Please Log in or Create an account to join the conversation.

More
3 years 11 months ago #21185 by Josie
Replied by Josie on topic Introduce Yourself Here.....
Hi Carissa

Well you've already had a wealth of excellent advice. I have one thing to add that i have picked up on. You say you work and look after your husband and kids! This is super woman stuff and having once done this I know how demandng it can be on the body. Add to this your pain and it is not a good mix.
A few suggestions- have you consulted a dietitian about your diet and weigth! May be worth trying
The other thing is can you make a change to part time work to ease the demands in your day to life and pace your days better- this could help a lot with your pain. Pain management courses teach you about pacing your activities and the boom bust theory being where you do too much and it results in a pain flare patterns. The other thing they teach is is called the 3 Ds. This stands for DO, DELEGATE, DUMP.. Meaning you think carefully about what you do and delegate the things that you know will exacerbate your pain, delegate or dump the things that you can't do- delegate if they are essentail etc. We have to be very honest with ourselves here because i know i get very pig headed about wanting to do certain things NOW and do them myself because i am feeling impatient.

Also change doctors! You need a doctor who is on your side and will work with you and believe your pain. And try to remain neutral about your SCS , they dont work for everyone and don't stop the bad pain just some of it so all the other management skills need to part of your treatment plan.
Hope this helps

Josie
The following user(s) said Thank You: Carissa

Please Log in or Create an account to join the conversation.

More
3 years 11 months ago #21199 by Carissa
Replied by Carissa on topic Introduce Yourself Here.....
Once again thank you so much for your advice, I have taken so much from your responses and I have a plan and hope for the first times in years and it's real hope not a pipe dream that my pain will disappear but that I can find a way to still enjoy my life while dealing with my pain.

I have made an appointment with my Dr for tomorrow he has been with me the whole time and apart from the last visit has been amazing, I think he was trying to make me see the same thing as what you guys have shared, in that I need to find a way to not let this pain become my whole life.

He didn't word things as well as you guys did and I know that I can be overly sensitive too. If I feel that he is not the right Dr to continue with I know I will have the courage to make a change thanks to you. I also need to speak to my pain specialist at the pain clinic and tell him I need more communication and involvement from him. He is the one who will eventually do the nuero stimulator but he hasn't really done much other than tell me about the procedure and show me DVDs etc.

I'm going to see my Dr tomorrow and make a plan to manage my medication better and to look into therapies and a counsellor to talk to. I have also put forward an application to do a pain management course through this site, I think I may have missed the coming one but hopefully I can do the next one.

I honestly can't tell you guys how much of a difference you have made to my life in only one week, you should be so very proud to be the people that you are, you truly are making a difference to people's lives and I hope you know that. Xxxx[/i]
The following user(s) said Thank You: Peter, Mary, grappers

Please Log in or Create an account to join the conversation.

More
3 years 11 months ago #21205 by Mrs S
Replied by Mrs S on topic Introduce Yourself Here.....
Hi Carissa and to all the new members. Its great to see so many new faces finding their way here.

Sounds like you have put some great advice into practice already Carissa

Please Log in or Create an account to join the conversation.

More
3 years 11 months ago #21225 by Tac
Replied by Tac on topic Introduce Yourself Here.....
Hi, my name is Tac, I am 43 years old, and have been living with what had been an undiagnosed for the last 24 years. I would have times when the pain was debilitating and a decrease in my ability to do things, such as brushing and styling my hair, the only way to do this is for me to lay down on the couch with my head hanging over the edge of the armrest and do my hair in this position, then go to the bathroom and if unhappy with the style, I then repeat the couch time again. No amount of testing that any doctors had ordered back then had identified my problem. To cut a long story short with how I finally came to a diagnosis, two months ago it was confirmed that I have Facioscapulohumeral muscular dystrophy.

The pain has become so intense, there is not a day that goes by without constant pain, with what began last September with pain in just the shoulders and arms has now spread to my legs, at times all I want to do is amputate my limbs, which would take the pain away, as the Lyrica combined with either panadol/nurofen/ibuprofen/any other paracetamol I come across does nothing. I go to bed in pain and wake in the early hours of the morning in pain. I have asked my GP about putting me on Targin, but he is quite reluctant to do so because it is addictive. I am also taking antidepressants.

Please Log in or Create an account to join the conversation.

  • Mary
  • Mary's Avatar Topic Author
  • Offline
  • Platinum Boarder
  • Platinum Boarder
More
3 years 11 months ago #21227 by Mary
Replied by Mary on topic Introduce Yourself Here.....
Hi Tac,

I am sorry that you have to live with this debilitating condition, especially since you are not getting adequate pain relief. It would probably be an idea for you to ask your GP to refer you to a pain specialist. He/she may have some ideas on how to manage to make you more comfortable.

I am guessing that you are already under the care of a neurologist and also a rehabilitation specialist to help you to preserve the use of your muscles. Too little use can be bad and also cause more pain. There is a fine line in there somewhere.

Have you asked your neurologist about pain relief? I am not sure who does what with this, but if you can get the right team around you, it may help.

Let us know how you are going.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

Please Log in or Create an account to join the conversation.

Moderators: Johnnojo.m
Time to create page: 0.271 seconds