Question for others with RSD

[Sithie]

If yall remember, when I went to ER they sent me home on morphine (Avinza), 1/2 of what I was on berfore, and percosets for breakthrough. I had to quit the percosets, because of rebound headaches. So have been taking Darvocets from before for breakthrough. I am not getting much pain relief at all. The burning and twitching and spasms, have just been getting worse now for last 3 days. Today, the pain is bad enough, that I am taking benedryl, in hopes I will just sleep. But, my question is, today, not only is it my leg, but my whole body aches, and I am just weak. Have any of you had this?

Also, on another note, I have a tooth that really needs work, and I know that anything invasive came make is spread, I reaally am not ready to have this on my face. Any ideas about this, while rememberig WC will not pay for any of it?

I know I am rambling, sorry, I just hurt so bad.

[squigs037]

Sithie,
Yes, my RSD does affect other parts of my body, its the damn nerves!
Good luck, and it seems like the meds you are on may set you in the right direction, if not, get with the doc asap and get something that works, it took me awhile to finally settle on a set of meds (43 pills per day ) but it seems as if when the meds start to work the pain re appears and its off searching for some more/different meds.....needless to say, this sucks!

[red1030]

Oh Sithie, this sounds just awlful. Every time someone describes the pain related to RSD, I just say a prayer and wish I could do more. I don't have it, but I had to write to say you are in my thoughts and I wish you the best. Please talk to your doctor as soon as possible about what is happening how. Keep us updated.

[chrischris]

Hi Sithie, Darvocet doesn't do a thing for me anymore. I've quit taking it altogether and really need to get something better. My doc didn't want me taking Vicadin all the time because it is so addictive, but it really helps. I will be seeing him tomorrow so I'll see what's next on his list.

Anyway, I get the all over body aches when I skip the anti-inflamatories. Are you taking anything for inflamation? I was taking 1800 Mg. of Motrin but switched to Celebrex because it was to harsh on my stomach. Yes, I hurt all over when I miss a dose.

As far as the weakness, I've wondered about that. I tire easy and just feel weak most of the time, especially with a flare up. I generally thought that was due to lack of sleep.

I can't remember who told me not to worry about going to the dentist. I was a little scared when I went, but it worked out ok.

Now for me, it's all the blood work that is getting hard to tolerate. I can't hardly believe that a simple needle prick in my arm can set off a flareup like it does.

I think you need to talk to your doctor again about the meds. I do wish what worked on one worked on all. We are all so different.

Hope you're feeling better soon Sithie.

[Spring]

Sithie, I am so sorry you are in so much pain, From what you are decribing to me....it sounds like you are have a major flare up with your RSD. I just got over a major flare up it lasted for 4 days. I know you start to wonder if you will live through it. I say if you don't have the right medications to go to ER. I almost did yesterday morning. As you know my RSD is upper body..but when I started to get out of bed I couldn't walk on my feet at all...they were on fire...so I took some pain pills by me bed and waited but if then I had to limp around till I got to a chair. Took the rest of my pills...you just never know what the RSD is doing to our bodys. As for the tooth...I did have some work done...explained to the dentist to just do what had to be done minor work. He went ahead and deadened it just to make sure he didn't upset any of the nerves. I didn't have any more trouble. But I already have RSD on my face. The only thing I know that I do really bad is clench my teeth. And when my pain is really bad I clench them to the point I think I might break my teeth. So I would say I you know your dentist real well and you can explain the RSD to him/her...and make sure they don't get to digging all over deep in the gums..to upset the nerves and stuff. And try to keep the area calm...you should do fine. We have to have dental work done. I still have my teeth cleaned regularly.

First thing Sithie...you got to get the pain down. I know how you are feeling right know. Please don't go through another night of it. Go to the ER..and send the bill to WC. Then call your Dr in the morning. I found the following information off a site. You can read. It would as let wc know that RSD does cause all these problems for us. they should have to pay for them all. Dental care...Vision care. ect. Please keep me updated so I know you are ok. I will pray that you get so relief.

RSD...Tooth, and mouth pain.
Question
"Your injury was to the right hand causing RSD. This is in no way related to the right TMJ pain or the loss of teeth that you have developed since".
Anwser:
As remote and unrelated as they may seem, RSD can and does result in cranio-cervical pain, muscle spasm, TMJ disease and deterioration of the teeth.
It is quite common for patients who have suffered from foot or hand injury to develop low back pain, neck pain and headache. One common manifestation of RSD in response to pain is muscle spasm, and motor dysfunction. This can be in the form of flexion deformity of the extremity, difficulty with walking, flexor withdrawal of the muscles of the extremity, and lumbar and cervical paraspinal spasm. As a result, the patient develops muscle tension headaches, as well as spread of the muscle spasm to the facial muscles with resultant stress on the temporomandibular joint (TMJ) and severe pain and spasm around the TMJ.
With passage of time, the same phenomenon results in chronic trauma to the TMJ as well as clinching of the teeth and trauma to the teeth. The patient develops severe pain in the distribution of trigeminal nerve (sensory nerve for the face) and develops moderate migrainous vascular headaches (trigeminal vascular headaches).
In later stages of RSD the immune system becomes disturbed, and the patient develops poor oral hygiene and dental deterioration.
Long-standing unilateral (one sided) spasm of cervical paraspinal muscles causes increased input of pain into the upper portion of the cervical spinal cord. As a result, a referred pain develops with resultant facial pain and secondary muscle spasm around the TMJ and the jaw. The same referred pain causes migraine headaches, TMJ pain and chronic stress on the teeth with dental deterioration.
H. Hooshmand, M.D.

Question:
Dear Dr. Hooshmand,
I am told that I have RSD, but at times my doctor does not think that I have RSD because the swelling and color changes are not always present when he examines me. He keeps giving me Elavil which makes my condition worse. Can RSD cause severe spasms of muscles?
Answer:
Dear Ms. R,
Many thanks for your e-mail letter regarding your RSD.
1. The swelling and changes in CRPS/RSD are always intermittent and sporadic. Trigger point injections are not enough. You need epidural blocks and plexus nerve blocks (such as brachial plexus blocks).
2. Severe spasm and jerking movement of the extremities are very common in CRPS/RSD. The treatment of choice for these is Klonopin (Brand name, which I believe in Canada is called Rivotril).
3. MS Contin and MSIR are effective for cancer pain patients, but don’t relieve the neuropathic pain of CRPS (RSD).
4. The ideal analgesic anticonvulsant are:
a. Trazodone
b. Desipramine
c. Doxepin
H. Hooshmand, M.D.

[Babebahn]

Sithie:
Sorry about all the pain you are having. Everytime I hear about someone with RSD, it breaks my heart because I know how uncomfortable and frustrated they are trying to find the right medication to relieve the pain.
Hope you feel a little bit better every day.

[Lilly]

Sithie,
My heart breaks for you too.
You are in my prayers for strength ,pain relief, and no doubt well needed "peaceful rest" .
Take care..Lilly

[imsckofit]

Sithie, you are having flare ups and they hurt, I find myself in alot of flare ups of late, I pass out while on computer hitting my head on screen to wake me and when kids get home from school I have been passing out because of pain being so high, and it scares me my kids wake me slowly amazing what they have learned to do, they have found out how to wake me slowly (they are the best)
I get real stiff and find it very hard to move the meds your on do not sound like they would even make a dent! Spring is right if this keeps up you must go to ER, do not worry about what they think! TAKE CARE OF YOU!
I send you soft hugs and some of my strength

[Spring]

Sithie..How are you today. Please check in so we know you are okay. I sure hope you got some pain relief. Just reading post you could tell you were in alot of pain. I sure hope you can get your Dr. to do something more for your pain. Give us an update. Hope to hear from you soon.

[Sithie]

I am still hanging in there, have called the dr's new office, but of course no call back so far. I don't know why I should go to the ER as they will just call him and ask what to do. WEhy can't he just call the other dr's at his new place and have them write a script? I don't even know what to ask for. I just hurt, and whant it to stop!