[rafiki123]

I'm new to this forum, but not to RSD. I was diagnosed with RSD in 2002 after a fall down a step and a torn ligament in my left ankle. Thanks to God, great doctors, early diagnosis, and a variety of treatment I eventually went into remission after a couple of years of pain. I have had a surgery since and took precautions ( a nerve block) but no reappearance of RSD. I'm 51 years old, married, three children (one still at home) and am a missionary living in Nairobi, Kenya.

About 6 weeks ago I came down with a nasty virus and it has been doing all kinds of weird things to me. I have been on bed rest almost the entire time. I've had a variety of symptoms: fever, sore throat, swollen glands, ear infection, inner ear nerve damage, orthostatic intolerance (decreased blood pressure upon standing) dizziness, weakness, exteme fatigue, increased heart rate. But what is really scaring me is a few nights ago the toes on my left foot began twitching, my left leg became bone chilling cold, and I had very strange sensations in my left foot. Strange enough to make me get out of bed and examine my foot. Sure enough it was redder than my right foot. Not a lot, but noticeably. My son confirmed it. Now since then I have had the weird sensations and the cold feelings, but no redness and no twitching. And there has been no pain. I know I should not jump to conclusions and scare myself. But with all the other stuff that has been going on lately, I have been focusing just a bit too much on my health. I need someone to just reassure me. I don't want to go through the RSD nightmare again! And even though I have always used the word remission because I have read there is no "cure", I have believed myself to be cured. As far as all the other stuff that is going on, the doctors are still doing tests. Most are coming back normal. Epstein Barr is positive for reactivation. Other blood work is still out. I am seeing a neurologist next week, so I guess I will mention these new symptoms.

I'm beginning to worry though about having so many varied symptoms. I know doctors often will begin to label you as "crazy" or depressed when things are cut and dried. It makes me not want to tell them everything.

Anyway, there is a good chance that by Thursday all these new symptoms will have gone away. In fact I feel some better just typing this all out. Thanks for reading!

Debbie

[bobber]

Hi Debbie
I hope that by thursday, you are better,if your up to movement,,work out and walk alot if your able too,,movement is great,and is said to not only help with rsd but to control and or throw it into remission,,kinda like keeping it at bay in your predicament,,aqua jogging really helps me alot,,,and the Almighty to whom you are a missionary ,is the one who heals,,,,your on the right track,,and my thoughts and prayers are with you too,,,,,,,,,,,,,,bobber

[SBOWLING]

Hello Debbie,

First let me say THANK YOU for taking the message of our Lord and Saviour to Kenya. God has answered all my prayers and meet my every need for the manageing of my RSD. Give him your cares and concerns about your RSD and lay them at the alter he will give you peace. If it has come out of remission he will take care of you. PHILIPPIANS 4:6-7
reminds us: Be anxious for nothing but in everything by prayer and supplication with thanksgiving, let our request be made known to God. 7 and the peace of God which surpasses all undrstndsing will guard your hearts and minds through Christ Jesus.

I have fullbody RSD with some organ involment. My docotors are always amazed at how I manage such a challenging conditon. I am quick to remind them that it's only by God's grace I get by.

May you find peace and healing at the hands of our amazing God.

take care,
Sherrie

[bobber]

Sherrie
Good advice,,we should take evrything to the Lord.. very impressive advice,,,,you get a chance read Isaiah 2:22 ,,,,My hope is in the Lord,,,,,,,,,,,,,,your brother in Christ Jesus bobber

[daniella]

Hi welcome to the board though I am sorry about what you are going through. For myself I have had my rsd spread but also on other hand conditions that were very painful and long lasting which they could not figure out went away and turned out not to be. I guess my best advice is to try to stay in the moment of the day. I am working on this myself and of course it is easier said then done. When I begin to get upset and anxious I take a deep breath and remind myself of what I need to do to get through today in the best possible way. May I ask what the virus was? Did you have bloodwork done just to rule out other things? Is this neuro someone who treated you in the past for rsd? I am assuming you went to a gp but if not I would to get bloodwork done. Also I know for me if I had to be on bedrest at all I would be going backwards in rsd pain and overall with that. Now everyone is different but I wonder if being not mobil has also contributed? Well take care

[rafiki123]

Thanks for the reminders to not be anxious but to take everything to Jesus! It was just what I needed. He certainly sustained me during the years of RSD before. I'm praying I don't have it again, but if I do then he will help me through it.

My mind has been racing with what ifs. At least it is very early, but what treatments should I start, etc. I am already on Topamax for migraine prevention but a lower dose than I was on for the RSD. I need to get moving, but that is difficult because I am so dizzy from the virus that is still lingering. They still don't know what virus. I have seen a gp and have had lots of blood work, but for some of the tests they have to send the blood to South Africa because they don't have the capability to do the testing here in Kenya. It takes about 2 weeks to get some of the results.

Thanks for the encouragement!

Debbie

[daniella]

I know it is not easy to not get anxious. Trust me anxiety is my middle name but I do feel as I work on this overall mind and body does better. Is there a way you can see if there is anyting else you could get rx then topomax for the current? It may assist you to get moving. I'm sorry you are still feeling dizzy and ill. You are in my thoughts.

[SBOWLING]

Debbie,

It is our human nature to worry and have fear of the unknown. I find myself saying God I have given this to you help me let go of it again. satan the master of worry and fear works harder when he knows GOD is victorious.

I am sure that the unknown cause of your virus is also causing concern and anxiety. Althought God is the most important part of my treatment plan. I do take medications I take .5 mg. of Ativan twice a day to help my anxiety. I fought taking medications and take at little as possible but God works through the hands of doctors.

Anxiety is our worst enemy when it come to our pain. Take several deep cleansing breaths. Breath deep and release the air slowly. Now ask God for his peace to cover you and his wisdom to guide you.
Take care,
Sherrie

[Praise God]

Thanks for sharing your story about going into remission - God is good!

I will be praying for you that God will bless you, once again, with complete healing - actually, I pray He heals us all.

With God, all things are possible!

Has anyone tried the inpatient ketamine infusions? I think this is my next step.

Ephesians 3:20-21

20Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

[SBOWLING]

I have done the out patient ketamine in Philly under the care of Dr Schwartzman. After the fourth day they were discontinued. My pain levels were not going down and my heart was starting to beat too fast we decided the rish was too great.
My RSD is full body and Dr. S was clear from the beginning ketamine may not help me.