New Member - hopebutreality

Hope - I have moved your post as I think it will get lost -

hopebutreality said...
Hi Jeanette,

I am so new to this forum but reading your words I feel like I should reach out because I have had issues with family and especially with my husband understanding my pain.

I was only diagnosed with RSD two weeks ago, but it started six months ago ( I know that most of you have so much more pain and time with pain, but I am done apologizing for pain, so I claim my voice, even though I am fairly new to this... thank you for listening) .

I was mis-diagnosed over and over by podiatrists and e.r. doctors, x-rays, mri's, orthopoedists, etc. Everyone told me they didn't know what was wrong, or that it was "probably a" this or that. I was told fracture, tendon tear, bone bruise, ganglion cyst and other things, (a couple of these were true, but would have healed in a few weeks) but after four months, one dr told me about RSD and I just knew that was it.

I told my husband (who is wonderful and supportive, but has never had a broken bone) and he refused to accept it. I ended up feeling like I was going crazy for a little while, he would tell me that I was self-diagnosing while trying to research it, so I put off treatment and I really regret it. I would end up in a ball on the bathroom floor, not being able to breathe because the pain was choking me and having no one to talk to was the worst. I didn't want to bother them and I felt like I was losing my mind. Tried naproxen (made me shake and nautious), now on gabapentin and clonazapam (sp?), and seems to be maybe working, I don't know any more.

After I finally got an appointment with a neurologist, who diagnosed my RSD without an EMG because I kept a photographic journal of my foot ( initial injury was stepping on my foot with my other foot... good lord, if we could take back time) and the color/swelling changes, along with temperature changes,..... well, he didn't need an EMG. I am getting a 3-phase bone scan soon and starting nerve blocks...

My dad was with me for that and he has been tirelessly trying to find some answers...

My husband went into total denial. He berated me about being depressed and because I don't have all of the symptoms all of the time ( I can touch the affected area usually without pain, but all of the other symptoms are there) . He yelled at me because I was scared about becoming suicidal.... I think if I was not so tired and lost, I may have punched him. He is a good man, but it is so hard for someone outside to understand.

I know my journey is just beginning, and I don't have answers. I just wanted to tell you that you are not alone.

I have a nine year old daughter, and I am most sad that I may not be the mom I want to be.

My pain peaks at night (is this common?) and it has only spread from my big toe to my entire left foot so far. I am confused and to not have supportive people who believe or understand is the worst...

I feel for you and I hope your husband finds a way to understand and support you. I think that this is the most crippling part of this for me and I hope you find the support you deserve.

Don't give up hope. We can't give up hope.

I am going to a Calmare clinic on Monday to try this type of treatment.

Has anyone else tried this treatment?

Wanted to say welcome - and I'm sorry that you're another going through this. I developed CRPS/RSD after a knee injury and surgery 13 years ago, but was not diagnosed until I further injured my knee and needed another lot of surgery seven years ago. Since then it's spread to all four limbs, my back, internally...a bit of a mess.

One thing that is in your favour is that you've been diagnosed relatively early on. Most of the literature suggests that if CRPS is diagnosed and treated aggressively within the first 3-6 months of onset, the chances of remission are much higher. Nerve blocks are a good early step - and it's also imperative that you try to keep using your foot as normally as possible - physiotherapy is really, really important - but of course we have the hurdle of needing the pain to be managed so that we can do the physio without triggering unmanageable flares in pain.

Pain at night - this is something I find too - but I'm yet to work out if it's a true increase in pain levels, or if it's due to a decrease in other stimulations and distractions - which of course would make the pain worse.

Calmare - it's not a treatment we have available here in Australia, but I had a few chats with a doctor on a CRPS board we used to have going - unfortunately now closed - and he certainly seemed to have good success with it. Among people I know or have chatted with online there've been mixed results - ranging from near-total pain relief to absolutely nothing. I guess one good thing about the Calmare is that it's relatively harmless - downside is that I believe it's quite costly?

All the best for Monday though - please let us know how you get on.

The link to the interview that Kristi mentioned is HERE

And Kristi - I'm glad to see you posting, but I'm sorry about your isolation. It's something that I too can relate to. Happy Birthday to your son for the other day.

Laura

Hi Hope
Welcome to our forum. I am sorry that you are having issues and that you have a spouse that doesnt understand. You arent alone in that department because my husband doesnt understand at first 2 years ago he was understanding and sympathetic and as time went on the sympathy disappeared.

I have pain in my left leg all the time due to a work related injury. I will never work again and I am on ss diability.

Hang in there and remember we are always here for you.
Betsey

It is me, yes. I think this is from maybe three years ago.

And gosh, please don't ever, ever feel silly or embarrassed asking assistance. We view ourselves as something of a family here, and there is almost always someone who is around to answer questions or lend a virtual shoulder if you need it.

If there is anything we can do for you, any quetions we might be able to answer, just ask away. If you need to vent, we're here an understand that too.

Laura

Hi hope,
I am so sorry to hear you are going through this. I just wanted to let you know you are not alone. I was recently dx with ms among other things after several years of pain of all kinds and am still trying to learn and deal with it all. I truly think my biggest obstacle is my hub. When i told him i finally have a diagnoses to explain the past 4-5 years his reply was basically i caused myself to have ms..Really....talk about supportive unsympathetic .... I decided right then i will no longer pretend everything is fine with me. I too claimed my voice as you put it. I decided that my health is more important than his comfort level and if he could not accept that then let the cards fall where they may. We have a son that is the only person who deserves, and is, more important than how i am feeling.
I found this forum last month answer the folks here are wonderful and have been a huge help to me. I am glad you found your way here too.
I do hope things get better for you and your family. I do have to say since the day hub told me that i have had less stress which helps.lol.
I hope your appt foes well on Monday.

Thank you everyone. All of your stories are so powerful and I am so glad I found this forum. I am trying to not let this disease rule my life, but as you all know, it is a hard thing to do. I have found that the simple things help the most, music, laughing, and even my job (I can still work as they let me elevate my foot and take off my shoe). On good days, I can walk and have been reading that trying to exercise even through the pain is important to not get things like osteoporosis and tissue loss.

I have also read some literature about using vitamins to replace some medications. I have been taking co-Q10, a pre-natal multi (stronger than a normal multi - I am not pregnant) , a meg-absorb vitamin B, potassium, cod liver oil, glucosamine/chondrointan (sp?) and vitamin C. Does anyone else use vitamins? I can't tell how it is working and it is expensive and sometimes I forget to take them...

Rhaevin, I empathize with how hard it is to watch your child be affected by all of this. How old is your son? My daughter is nine, and she doesn't fully understand yet. I feel like a bad mom when I can't go ride bikes or even go sit and watch her ride bikes, etc...

I do not have a PM Dr yet, as I was only diagnosed two weeks ago and I just got health insurance last Friday (thankfully!!!) If anyone has a recommendation for a good RSD PM doc in the Philadelphia, south-Jersey area, it would be greatly appreciated.

Formyboy, has your hub become more supportive? Mine is being great right now, but I had to make him go read testimonials and research this disease before he realized that I am not over reacting. He is actually the one who found out about the calmare, which he thinks is a miracle cure, but I am scared that if it doesn't work that he will go right back to frustrated and angry. I hope your husband and son are being supportive and that they help you enjoy life. By the way, the mayo clinic right now is testing the efficacy of Calmare on all types of neuropathic pain, including for those with MS. I will post a like later today.

I have not told most of my friends exactly how bad this is because I don't want everyone to feel bad for me, but I realize that I will have to if I want them to understand that I am not just abandoning them. I am a bridesmaid in a wedding in October, and I am worried that I won't be able to walk that day. I also am supposed to get yellow shoes for it. I wonder if they make fashionable yellow flip flop/slippers....

thanks to everyone.
H.