[lostmary]

Boy,,,sometimes I wonder if the dr just looks for things to pin on me. He has upped my Opana ER to 30 mg every 12 hrs. and to not take my breakthru Opana IR. I was telling him that I haven't been able to sleep much because I wake myself up jerking mylegs around. He said I must have restless Leg S. and has put me on requak (sp) also. Lets see how this night goes. He really is pushing for me to try another scs, but I'm still thinking more about the pain pump. I'm going to Alaska next Sept 7th and I want to be able to enjoy the cruise. DH is sending me and my BFF's husband is sending her and we are going together. It's exciting, but I need to be feeling better. This is my lifes dream

Hugs
Mary

[loretta]

Hi Mary,
I am so sorry you dealing with these symptoms. Jerking, spasms, jolts, are common symptoms of RSD. The only thing that helped me was neurotin or the newer drug lyrica. I had pretty violent electric jolts waking me up-going thru my brain, plus constant leg jerks when I would relax to watch tv or sleep. I was on 3200 mg of neurotin and they totally stopped. I was on it several years, but slowly went off starting last October. I've only had a couple jerks since January this year.
I was going weeks with not getting to sleep until 5-6 a.m. Was falling apart, no life, sleep till afternoon. My Dr. is a neurologist, psychiatrist and pharmacologist. He does trial studies for a couple of pharmaceutical companies. One study he is just finishing with 200 patients is seroquel. This drug is used in high dose for bipolar and or schizophrenia. I don't have either. But his study was for a new use for the drug, given in low dosage of 300 mg. for fibromyalgia. The results were very good plus a side benefit of restorative sleep. So about 6 weeks ago I went on it. I'm absolutely amazed at the results. I take the med at 7 pm and sleep a solid 9 hours, good restorative sleep. He cut my antii-anxiety med in half and left it up to me on the vicodin. I'm now taking 2 vicodin instead of 6 and 2mg. of lorazepam instead of 6 mg. (anti-anxiety) The sound sleep, is giving me my life back. I've had RSD 14 years and full body now. I'm driving again, grocery shopping, dry cleaners, errands. It's wonderful. I think I can travel again. I'm planning a trip this fall to Bellingham, Washington to visit friends.
I wanted to go off the Neurotin because of weight gain. I don't have the leg problem so will continue to stay off neurotin or lyrica. This med is also given for the nerve burning pain. Before you try scs or pain pump, do your research, as the outcome isn't always what we expect.
I truly hope to go on this wonderful trip with the best possible health. Anti-anxiety med is one I like as it calms down the sympathetic nervous system, thus the pain level is more controlled.
Take care, loretta

[Jomar]

Loretta ,That is very interesting about the seroquel results for you.
thanks for posting it.

Oh, is the information on that study online ?
I think others might like to see it in case they want to ask their drs about trying it.
They might need to show dr the info.

I'd see if I can search it out too and post if I find anything.


found some info-

[Medication: Quetiapine/Seroquel
Usage: stiffness, fatigue, sleep, anxiety, mood
Common Dosage: 25-100 mg/day
Mode of Action: SNRI
References: Hidalgo J, Rico-Vallademoros F, Calandre EP. An open-label study of quetiapine in the treatment of fibromyalgia. Prog in Neuro-Psychopharm and Biol Psych 30 Jan 2007) 31(1): 71-77

Calandre EP, Morillas-Arques P, Rodriguez-Lopez CM, Rico-Vallademoros F, Hildago J. Pregabalin augmentation of quetiapine therpy in the treatment of fibromyalgia: an openlabel, prospective trial. Pharmacopsychiatry (2007 Mar) 40(2):68-71.]
http://www.nfra.net/fibromyalgia_meds.htm


[there are valid reasons for using neuroleptics to treat chronic illness, even if it isn't of psychiatric origin.

Both the older "typical" and the newer "atypical" antipsychotic drugs work by blocking dopamine receptors in the brain, as excess levels of dopamine are thought to cause the symptoms of psychosis, such as hallucinations and delusions. The atypical antipsychotic drugs (like Risperdal and Abilify) also block 5-HT2 serotonin receptors. Several atypical antipsychotic drugs have been used in fibromyalgia.
Read more: http://chronic-illness-treatments.su...#ixzz0NHDkoaUf

Quetiapine (Seroquel)

In many countries Seroquel is used off-label more than on-label, most often for sleep, as it is extremely sedative. In one study quetiapine proved helpful for fatigue and stiffness in fibromyalgia, but did not alleviate pain. Another fibromyalgia study combined quetiapine with pregabalin (Lyrica) with good results, though there were many drop-outs.

Read more: http://chronic-illness-treatments.su...#ixzz0NHDx3HO8


]
http://chronic-illness-treatments.su...s_fibromyalgia

[Dew58]

Mary,

I have you in my thoughts, and hope you are sleeping peacefully.

As an CRPS I patient, it seems that with every new symptom, comes a new medication( for me, anyway), from the PM doc.

My PM doc doesn't like to script Xanex, and I have been taking it for over a year for anxiety and panic attacks. His solution was to put me on Baclofen, a muscle relaxant, and he thought the med would take care of both symptoms. It doesn't, and now my PCP is scripting the Xanex for me, as she did in the beginning.

PM doc said he doesn't mind that I take Xanex, he just doesn't script it, and has not scripted it for the last 6 years. I did not have anxiety/panic disorder BEFORE the RSD, and find it frustrating that I have to see MY PCP to get scripts for the anti-anxiety medication...and thus, have to pay a doc visit and thecost of meds,too. This injury/dx is a WC case.

Hang in there, Mary. Hope the OpanaER 30 mg works well for you. I am still at 20 MG x 2 daily OpanaER..with my other cocktail meds.

My prob. is getting the OpanaER script mailed out to the pharmacy, from the PM doc's office, on time. My atty. wrote a letter to the PM doc explaining that this has happened 3 times: 1 tramadol, and 2 OpanaER scripts. It is negligence on the PM doc's office, and it has to stop. A record is now made of the poor svc.of PM doc on mailing script to pharmacy on time.

We are at the mercy of the PM docs. However, we do have each other to lift each other up..I am here for you

[ali12]

Hi Mary,

I hope the increase in Opena ER helps you and that you get to feeling better!

My leg jerks around a lot also. My Neurologist has diagnosed me with Myoclonic spasms / jerks. Has anyone mentioned that to you? the symptoms you described sound like what I have and myoclonic spasms are a complication of RSD too so could be a possibility.

That's so great that you are going to Alaska! I really hope you have a great time! I've seen some of the pictures and it looks like such a beautiful place! My mum and I are going to Spain on the 30th August to see my grandad and his wife. We don't see them that often so it should be nice. It's only about 2 hours away on a plane so hopefully, it wont be too hard on me. He has a pool there also so i'm hoping i'll be able to do some pool therapy.

Take care of yourself and I hope you feel better real soon! Please keep us posted when you can!

Alison