Any other RSD sufferers in Argyll Scotland or rest of UK.?
 

Hi im a new member.Im Flora99.i live on the west coast of scotland.
I have RSD since 2002 ---it developed from tennis elbow and tendonitous.
Are there any members who live in scotland with RSD?
I dont know of any in our area at all.
It would be good for my mental wellbeing to talk to others.if i can help others too that would be good.
Please post me if you want support and want to talk to me.
I have a lot of pressure from my GP to have investigations on my stomach and throat.i dont know if i should go ahead with the sedation and endoscopy as my pain levels are low and quality of life is so good.i dont want to risk spred of my rsd again.This has happened before when ive had a canula in my good arm.
I did have a canula in my foot with no flare up immediately after but i had no symptoms there then ,now i have painfully cold knees and feet!
I take a low dose amitriptilyn and am trying to lower it as side effects are unbearable,stomach erosion ,and blurred vision etc!!
Should i risk a sedation and blood being taken?if i get a flare up i will have to raise the amitriptilyn again.
They are willing to put a canula in my foot again.
Last time was ok but i had no rsd in my feet then.
I know i cant face endoscopyband biopsey without sedation.
If you have useful comment or want me to support you ,please contact me
Big gentle hug to all out there fighting the firebreathing rsd dragon.
Love
Flora99

Hi Flora,
I would check with your neurologist and maybe a gastrointestinal specialist.
Also your gp or pm dr may also be able to point you in the right direction. I hope they can help you and also rsdhope.org may have some info on this.
Hope you feel better and good luck with your search. Soft hugs to you too.:hug:

Hi I'm down in Milton Keynes. Firstly you should not have any invasive procedure and that includes taking blood unless your situatuin is life threatening. even the slightest trauma can cause this to spread. My first was caused by the use of a sensitivity pin 4ins outside the RSD affexted area.
Should you absolutely have to have an operation then print out the following protocol and insist it is followed

Hospital ProtocolRSD/CRPS Patient: Handle With Care!
The Joint Commission on Accreditation of Healthcare Organizations has man-
dated the healthcare institutions that they accredit to assess and treat your
pain. Pain is now to be assessed as the fifth vital sign. Patients have the right
to demand pain control and to be pain free.
Reflex Sympathetic Dystrophy(RSD) also known as Complex Regional Pain Syndrome (CRPS) is a chronic condition characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch. People afflicted with RSD/CRPS are extraordinarily sensitive to certain stimuli, such as touch, movement, and injections.


Patient Tips

1. Bring a written copy of your medication regime. It is important to verify whether your medication regime can be taken care of solely through use of the hospital's
pharmacy. Some medications may not be part of the hospital's formulary.
2. Avoid having ice applied to the RSD-affected limb
3. Instruct all hospital staff to always ask before touching you!
4. Request that the surgery protocols be adjusted so that the pre-op shave be done after anesthesia
(catheter is in place for epidural or whatever). It feels like a lawnmower has been run over your legs when they shave without anesthesia.
Patient Room

1. Whenever possible patient should be in a quiet part of the hospital
2. In a semi-private room, patient should be in the second bed to avoid inadvertent bumping
3. A Zone-Air bed should be used (adjust mattress pressure to patient preference)
4. Heat and air conditioning should be well regulated
5. Standing orders should be issued for patients to have warm blankets
6. Foot Cradle to hold bed linens off body area (will diminish tactile stimuli)
7. Frequent linen changes may be necessary due to hyperhidrosis (increased sweating).
8. Allow family members to bring in clean sheet and pillowcases for patient. Hospital sheets are not soft and can irritate the skin.
9. Place a sign above bed designating affected limb
Procedures

1. Perform a phlebotomy on unaffected limb only
2. Use Pediatric needles (any trauma can cause the spread of RSD to a new site)
3. Warm Alcohol or Betadine wipes with warm running water on outside of package before opening package (these wipes can be very cold to the patient)
4. If PICA site is available, see if blood can be obtained from PIC instead of using vena puncture technique.
Blood Pressure and Pulse Rate

1. Use cuff on unaffected limb only
2. Use thigh cuff if both upper extremities are affected Transport

1. Ask what kind of help the patient needs when transferring to a stretcher or wheelchair (simply touching arms or legs may cause hyperalgesia)
2. Use extreme care over bumps, such as elevator doorways
Feeding

1. Be careful not to touch patient extremities with bedside table
Patient Identification

1. Place red bracelet on unaffected limb
2. Place red dot sticker on patient chart
PO Box 502
Milford, CT 06460
Toll-free: 877-662-7737
info@rsds.org
www.rsds.org




I've also just been sent this

Copywrited Material The anesthesia technique will vary with the surgery. These are general guidelines and the patients doctor should make their own decisions. Here are some guidelines: Avoid surgery unless you have to.
Pre – operative
1. Start gabapentin or Lyrica a 2 weeks before
2. Minocycline 1 day before and continue for 2 weeks after
3. Vitamin C 500 mg one daily. Start day befure surgery and continue for 45 days aftersurgery
Intra-operative
1. MUST use iv ketamine as part of anesthesia
2. Apply Synera patch or some numbing medicine patch over IV site before insertion of IV must be inserted with minimum trauma (first shot)
3. Epidural or spinal anesthesia, if lower body surgery
Post – operative
1. Continue low dose IV ketamine in the recovery room for a few hours – very important2. Continue, minocycline, gabapentin/Lyrica3. Continue epidural anesthesia for pain control, if inserted pre op, for at least 24 hours.
If I think of anything else, I will let you know.
Pradeep Chopra
copywrited materialDO NOT COPY WITHOUT GIVING RECOGNITION TO THE AUTHOR DR. PRADEEP CHOPRA

Hi I live in Devon & have RSD in both legs, left arm from fingers to shoulder, left neck & I've started having back pain recently. I'm on 450mg pregabalin daily. I think the protocol is a good thing to give every doctor/nurse you see. I wish the UK was as good as the US for treating us, but we're sadly running well behind them. I hope you don't need invasive treatment, but if you do take care. Mandy x

Cinders999 If you want to do something about that then please e-mail your MP. You will see what I amtrying to achieive and a suggested format on my facebook page
https://www.facebook.com/messages/#!/kevin.scardifield

Dear Kevscar
Wow thankyou for sharing this v useful information.!
It makes me feel less scared if i do go ahead with the endoscopy as i now know there is a kind of safety net so to speak, if i do need surgury.
Very interesting that you say my gut feeling was right about having blood taken!
My GP has been pressing me for years to have blood taken.I now know i was right to resist!
How do i find a way of presenting your infomation to my GP in a way she will accept?
You know what the NHS is like it only recognises infomation they call cosha.
My GP is a v good listerner and people person,and was an anesatist before a GP so ive half a chance.
I think i will print off all the valuable infomation that all you good people gave me and give it to her!
My only fear is that she will say, im in a good place most of the time with low pain levels,unless i get a flareup,and that i dont need to take such precautions!
I can but try.
Again thankyou for sharing you hard won infomation with me.
Big gentle hug
X
Flora99

Hi Cinders999
Yes i will present my GP with these protocols.Its good to make them aware .
Was good to get your feedback!
It is a good idea to write to my MP to raise awareness on the problems we all face!
Big gentle hug
Love
Flora

Hi Flora :)

Sorry, I'm late to this thread! I started on a post to you two days ago and lost it all when my iPad decided to have a wobbly and crashed. Lol. Not a happy bunny...

I'm down in Gloucestershire. My CRPS started in my left knee after an arthroscopy, and has since spread to my whole left side in the two years following. I'm only taking low dose Lyrica at the moment (50 mg twice a day) and the rest is pain management stuff, which works better than the meds right now :rolleyes:

Good luck if you do have to have any procedure. It's not fun, but handled right it doesn't have to mean spread or worsening symptoms afterwards. Just be pleasant about it and give your docs the guidance. As my mum says, if you don't ask, you don't get!

Take care and keep calm :winky:

Bram.

And I'm a touch further down in London.

My CRPS developed following wrist surgery in December 2012, so this is all still pretty new to me. I have CRPS in my right arm, primarily my hand wrist and shoulder.

I'm afraid I don't have any advice. I did have a surgical procedure on my right hand in June 2013 to help increase my range of motion. I had a manipulation under anaesthesia and a release of the MCP joint. Basically, the surgeon said that the tissue above the knuckle in my little finger was stuck, preventing movement of the joint. He used a small needle to slice the tissue a bit. He also manipulated my hand and wrist and injected steroid into my hand. I was very sore after this but it did improve my ROM. It did not cause a worsening or spread of the CRPS but I know it could have done. I was lucky. I did take vitamin C daily before and after the procedure. I have no idea if this helped but it certainly didn’t hurt.

Best of luck with whatever you decide.

Kim

thanks, sent you fb request & I requested to join a couple of the groups from there, Mandy

Hi Brambledog
Thats interesing your in Gloucetershire i use to live in Malvern,and know it well.
Dont apologise for being late you are a busy lady helping other people too!
I still havent decided to go ahead with the proceedure yet.I have another session of councelling next week,which i feel might help.
I am mindful of what everone has said re presenting myGP with as much info as poss,which i hope to do when i see her for an update fairly soon.
Yes i know i must try not to get uptight and upset because it will make my RSD worse,but its so hard to do that while im keeping thoughts about what i face in my concious mind
I normally coap by blotting it out as much as possible.
Too right about dont ask dont get!!
Big Hug
Flora

If you e-mail me RSDFighter@hotmial.co.uk I will seend you the protocol just as it is from the site you can then print it out to take.

Hi Kim
Thankyou for sharing your experiences with me!
You were v brave ,and im so pleased the surgury helped you and you didnt get spread!
The vitamin C thing sounds good.
I useto take vit C every day but had to stop because it irritated my gastric problems because its basically an acid.
I have heard of a gentle buffered version so i could try that.Ive never bothered to take it as my reflux is so bad that when its better i dont want to risk a flare up,but if it controls the spread ,and i take it for a short time before and after my proceedure if i go ahead.
Flora99 (kim)
X