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CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/5/2012 9:47 PM (GMT -6)   
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
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

hopebutreality
New Member


Date Joined May 2012
Total Posts : 10
   Posted 5/5/2012 10:07 PM (GMT -6)   
Is this a link to an interview with you? I am sorry if this is a stupid question, I am really upset right now, trying to keep it together, so I miss some obvious things sometimes.

The corkscrew is such a perfect description. I tried to explain it to family by hand gestures, like kneading bread, like a grinding machine... this pain is not constant for me though, it is only at the worst times. There is always pain, but the corkscrew is an exquisite pain that only attacks for a maximum of 4-5 hours, and so far, only at night.

I am so confused.

Why don't doctors know how to diagnose this? Why does no one I know have any clue that this exists?

I have researched it, but I am still miles away from an answer that I can accept. I feel that awareness is the best way to address a problem.

This is ridiculous. Thank you for taking the time to speak with me. You have been through so much I feel silly even putting myself in your world and asking for assistance. I appreciate all and any of your answers and time.

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 5/5/2012 11:15 PM (GMT -6)   
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
Age to a woman is like krypronite to Superman.

hopebutreality
New Member


Date Joined May 2012
Total Posts : 10
   Posted 5/5/2012 11:32 PM (GMT -6)   
Betsey

Thank you for being strong enough to be honest.. I know that this will get harder with time, and my goal is to try to be an advocate as well. I appreciate your candor.

My husband is trying his hardest. I cannot fault him for not understanding. I don't know if I would understand from the outside looking in. I just know that I need to speak when I am hurting now. I can't pretend I am ok anymore.

I appreciate all of the support, so much, I can't even tell you how much.

I will let everyone know if the calmare treatment has any benefit for me Monday.


I refuse to give up yet.

Thank you.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/6/2012 12:08 AM (GMT -6)   
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
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

hopebutreality
New Member


Date Joined May 2012
Total Posts : 10
   Posted 5/6/2012 1:01 AM (GMT -6)   
Betsey,

I feel like a jerk, I didn't ask how things were now.

I am sorry for being insensitive.

Thank you for being honest.

H.

formyboy
Regular Member


Date Joined Apr 2012
Total Posts : 27
   Posted 5/6/2012 1:10 AM (GMT -6)   
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.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 5/6/2012 1:37 AM (GMT -6)   
Hope, here is another good link, from just over a year ago:

www.time.com/time/specials/packages/article/0,28804,2053382_2055269_2055261,00.html

I've been struggling with my CRPS for four and a half years now. I've had multiple people walk out of my life because of this disease we live with (something NOT at all covered in the article), I've watched my parents worry about me when ever we go places or when they leave me alone, and I've watched my son want to cry because he dislikes his Mommy hurting all the time and then is frustrated because I can't do so many of he things he wants to do with me.

When it all started it was just my right hand. Now, now it's both arms from my fingertips to my shoulders. Recently my left arm has given me more grief then my right. My spinal cord stim helps a bit, but causes issues of its own, like making me twitch like I've got CP. I had a Service dog briefly I was training, but it didn't work out, and between dropping things regularly and worse.... doors, I could really use the extra set of "hands".

I saw two shirts, and I keep meaning to order them, and they look like this:

Living with CRPS is like draining all the blood from your veins and replacing it with lighter fluid.

If Hell had physical, clinical symptoms it'd look like CRPS.

Just make sure you get a pain doctor who is familiar with CRPS, and is on board to help you treat it appropriately. Don't let them treat you like less then you are, and be your own advocate. I've already had to change pain doctors once. And like Laura said, if they treat now, there is a good chance of full remission. I know they generally do it with nerve blocks, but however they try don't give up, talk about your feelings so your spouse isn't in the dark, and always remember.........

You're not alone.

-Rhaevin
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone, Celexa and Zaniflex.
February 2011 successful SCSU trial
May 2011 SCSU implanted

hopebutreality
New Member


Date Joined May 2012
Total Posts : 10
   Posted 5/6/2012 10:18 AM (GMT -6)   
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.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16793
   Posted 5/6/2012 10:49 AM (GMT -6)   
Hi Hope and welcome to the chronic pain forum. While I am glad that you found us, I am sorry that you have to be here. But, regardless please know when you come here you are not alone with your pain, pain can isolate us in so many ways. Hope you have a condition that has been around quite a while and as Laura & Rhaevin stated, it is a must to have a dr in your corner that knows all about this and how to treat it, that is half of the battle. Never be afraid to advocate for your own care either, sometimes we have to do that too. Please never dismiss or compare your pain or problems to anyone else's. It is your pain and you know how it affects you. We do not have any contests here on who hurts the most or has the most wrong with them. We are just here to support each other, offer up our own experiences and always hope for the best.

You will find spouses to yo-yo back and forth, they tend to think they can fix everything and when they can't fix something, things can get hinkey. Include him as much as you can, have him attend a drs appt from time to time. Look on the web for a good reputable web site and print some of the info off for him to read. Pain is a strange thing, its not something that can be seen like when you cut yourself with a knife. Sometimes I don't understand this crazy world of pain and I have to remind myself if I can't understand it how can I expect anyone else to.

You will find that people that live with chronic pain are some of the strongest people you will ever meet. Many times depression sneaks in on us and we need medication and some of us reach out further and get counseling. But, that does not make us weak, we know what we must do to keep going. I found a wonderful psychologist that helped me so much. I never thought before I would ever need something like seeing someone, best thing I could have done for myself. The main thing is to not let depression take control.

Try to maintain as much of your life as possible. If you find yourself needing to make modifications thats ok too. Just whatever it takes to keep going. Don't give up on yourself either, you are much stronger than you realize. Sometimes we don't know until we get pushed into a corner.

Anyway, I wanted to pop on and tell you hello and welcome aboard. Take care and keep us posted on how you are doing......Susie
Moderator, Chronic Pain Forum & Psoriasis Forum
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