Hello JK123,

Welcome to the NeuroTalk Support Groups.

I'm sorry you're having so much pain and that you don't have any answers.

What type of pain is it? Is it a sharp pain?

Have you had any past injuries or surgery to your knees or your feet?

Here is the link for the
Reflex Sympathetic Dystrophy (RSD and CRPS) Forum

I would also ask over on the Peripheral Neuropathy Forum

I hope you get some answers soon from your doctors and some relief from your pain.

Welcome JK123.

JK123,

It is great to have youcome and be with us. There are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Welcome to Neurotalk from a fellow Aussie.

So sorry to read about your pain. I hope you get some answers soon.

Hi Lara and everyone else,

The pain in my heels is tingling and sharp. In my foot arch it is a burning pain. In my knees and elbows its a dull ache. In my back it feels like muscle tightness and aches. I have not had any surgery.

I hope the rheumatologist and pain specialist have some suggestions for reducing the pain and that they don't just say I have to live with it.

Thanks,
Joanne

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I saw the rheumatologist today and as I expected all results of the bone scan and autoimmune tests were negative except ANA which in itself doesn't say much.

The rheumatologist said he can't do anything further for me. I told him I'm seeing a pain specialist on Thursday and he said that's the way to go.

I feel disappointed and discouraged. I have spoken to a couple of friends who have had pain issues (one has an autoimmune disease, one has fibromyalgia/RA) and they both seem to be coping, living life, working and had some level of improvement. I am just worried that unless my pain levels improve I won't be able to live life or cope.

One of my friends suggested I see a specialist haematologist, which I will look into.

Sorry to be so needy, I just need words of encouragement at the moment.

I'm sorry to read that you didn't get any answers from your appointment.
I hope you get some help with your pain from the pain specialist.

Sorry you're feeling so down about it.
Just keep searching though.
It's awful not to know the actual reason for pain.
If you knew what was causing it all, at least you'd feel as if you could move in that direction.

take care.

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Thanks so much Lara

Hi,

I saw the pain specialist today and he thinks I have fibromyalgia brought on by several traumatic events over the last few years. He suggested I see a specialised psychiatrist and physiotherapist. I may be prescribed an antidepressant. Will see the psych and physio in 2 weeks.

Pardon me for being a newbie giving my two cents here...I have CRPS, had not heard of it until I was diagnosed by 3 separate doctors in the space of 3 weeks, after 5 years of thinking it was all in my head because I should have been getting better, not worse. It started in 2006 after I suffered extensive nerve damage and bodily trauma with permanent bone injuries resulting from a drunk driver crashing into me.

I didn't research anything online because I knew that a lot of people self-diagnose and start to have symptoms after reading about things. The mind is powerful, it can trick you into feeling things. I recommend thinking positively and not convincing yourself of any illnesses until they are diagnosed by at least 2 different doctors. I've been diagnosed with Fibromyalgia as well, yet I personally do not believe it and probably never will. One disease is enough for me.

I've always had foot pain as I have rheumatoid arthritis and worked on my feet everyday since the age of sixteen. My feet would swell and I had to wear orthopedic shoes whilst my coworkers pranced around in stilettos. I had back pain on and off as well but I always worked through it. And I thought that pain was bad!

I hope you don't have CRPS because it's the absolute worst thing in the world. My mother died young after a lengthy battle with Lupus and other auto-immune illnesses. I never imagined I could have something worse, something so awful it's nicknamed 'the suicide disease'.

I've met a few people since my diagnosis who tell me about their pain and then proclaim they must have CRPS, too. It's so rare that I doubt they all do. I like that there is more awareness of it now, but I think the downside of that is people convincing themselves they have it when they have one or more symptoms. That can cause psycho-somatic disorders.

I am definitely not saying you don't have anything. I feel for anyone in a lot of pain. I just think that you shouldn't worry about it too much while pursuing a diagnosis. I thing counseling is great and I wish I was getting a little mental health guidance. It can make a significant difference.

Please try to remain positive as hard as it is. I don't get pain management like other people with severe CRPS. Mine is advanced and has spread. I'm homebound now and I can't do the things I want to (when I had good medicine I could still do some things but in the UK they don't believe in pain medicine) so I yet I still have hope for the future. I'm sending positive vibes your way and I hope you get relief.