worse day so far
 

hi, i have crps, and today has been by far the worse day for me, i know there are many of you out there who are alot worse off than me, but i just need to vent.

the pain has been at max level, i been dizzy all day, my balance has been very poor and this is whilst im on crutches.
i start treatment on monday, im having a TENS fitting then on tuesday i start another round of physio but this time they know what they are dealing with.

is this just the beginning for me and a taste of whats to come pain wise etc?

any thoughts or ideas to try to combat this hugely appreciated

thanks in advance

Hi,
 

I'm sorry you are having such a bad day. Is the weather changing where you are at? The weather does a job on me.

I laid down yesterday to take a nap and woke with cold chills but I had electrical shocks in my legs and burning pain in my feet. It was 80 outside yesterday and I believe I just got too hot and then went into a pain cycle when I started cooling off.

I wanted to say also I used a tens unit for a few years with my TOS and RSD and I think they help a lot. I loved mine. I had 2 that I used since I have bilateral TOS. I think you will see some help with them.

My Dr. use to tell me to soak in a hot bath but it never seemed to help me. Some on here say they use epson salts and it helps them a lot.

I don't know what meds you are on. I take Methadone, have for over 4 yrs. and I love it. Again others don't have good luck with it. We all have to find what works for us.

I don't remember what state you are in but as for me, the barometer change does me in. Have you noticed a change in it.

I sure hope things start calming down for you.

Ada

im in the UK, the weather has changed a little but nit dramatically, its got a little colder.

the only meds im onis gabapentin 1800mgs, however it has just been doubled.

i just dont know how im going to get through this i really do feel alone, ive got my mum but she just doesnt know how to help me, is there anyway to get her to understand what this crps is?

Hi,
 

The best way I think to let her know about it I think is to run some info. off of the internet and also go to the Library and see if they have some books on cronic pain and RSD for her to read. She wouldn't have to read the whole book. Just parts to help her.

My daughter and my son-in-law's sister are my caregivers. I don't know how much they understand about RSD but they are very helpful. I doubt though if either one could tell me what RSD is.

We do feel alone in this, especially when our pain level is at it's worst. I don't think it matters how much support we have. They can help us with our care such as running hot baths, and fixing meals for us but as far as keeping us from feeling alone in this there isn't a way, I don't think. I don't remember how many times I told my Dr. I felt alone in this mess. The pain gets unbearable. I feel like I am in a better place then most on here but I have my days. I also think mine is getting worse in my legs and feet and I'm trying to deal with that. Still I know you and others are worse off then me.

My Mother is gone now. She use to try to wait on me when I was at my worst. Unfortuntely she was worse off then I was at the time.

We're here for you also. I know it's not enough support but at least you can come here and talk to us and learn some things that might help you to lessen the pain.

I do know what you are saying. My Drs. favorite line was, " get in the tub soak in hot water and epson salt." I use to scream at him that it wasn't working."

I get triggerpoint injections and have been on Methadone for years so that's helped me a lot.

All of us find different things that help as I said. Do try that tens unit when you get it. I loved mine.

As far as being dizzy, that could be the meds but I do know I was dizzy a lot when I was at my worst. I fell at least 13 times when I first started with this so you really have to be careful.

I do hope that you start feeling better and stay on here with us and that will help you to feel that you are not alone so much.

Ada

Sorry to hear of your troubles. I've never had a SCS because my RSD was never localized enough to make a difference, or so I was told. However, if you run a search in this forum under "spinal cord stimulators" or "SCS" you'll pull up a lot of anecdotal reports. For an immense treasury of articles on the subject, go to the RSDSA Medical Articles Archive page at http://www.rsds.org/2/library/articl...ive/index.html and scroll down to those articles listed under the heading "Spinal Cord Stimulation."

For what it's worth, here's a complete list of my own RSD related prescription meds:

1. Neurontin (gabapentin) (600 mg.) [1-2/day]*
2. Xanax (0.5 mg. 5/day) [a benzodiazepine which, although the studies have shown only equivical results, has tremendously helped me with shooting nerve pain]
3. Oxycodone (5 mg.) [approx. 4/day]
4. Oxycontin (20 mg.) [2 afternoon/as needed]
5. Baclofen (10 mg.) [4 tablets/day]**
6. Ketamine 5%, Lidocaine 5% and Gabapentin 5% gel [4 - 5 ml./foot, 2-3/day]
7. Marinol (5 mg.) [1 capsule by mouth two times per day and 1 to 2 at bedtime] [synthetic THC, taken only as needed]
8. Zometa (zoledronic acid) [periodic intravenous infusions of an improved version of Pamidronate, great for deep "bone crushing pain," not sure if it's available in the UK, although I know that Pamidronate is, it's just not as effective as Zometa]
9. Naloxone HCL (Narcan) (.4 mg. (1.0 cc) orally concurrently with oxycodone/Oxycontin to block intestinal opioid receptors)
10. Erythromycin E.E.S. 200 200/5ml [1 ml. in a.m. to assist peristalsis re opioids]
11. Namenda (memantine HCL) (10 mg.) [3/day] [to try and stave off loss of brain gray matter secondary to chronic pain, also helps with general alertness]
12. Razadyne (galantamine HBr) (16 mg) [1/day] [as above, but no discernable effect on alertness]

* I find that our mutual drug, Neurontin, causes too much drowziness for my taste hence my reduction in use from what was 2,400 mg./day. Unfortunately, when I was on an alternative, Trileptal, it caused a dangerous drop in my blood sodium levels, and I've heard enough things about Topomax to keep me from ever trying it, especially with my history of glaucoma.

** Baclofen acts on the spinal cord nerves and decreases the number and severity of muscle spasms caused by CNS disorders. It also relieves pain and improves muscle movement, at the cost, however, of a little amnesia in some people, to the point that I couldn't take it while I was working has an attorney. But now that I am "retired" it's a different story.

I also take a gram of Magnesium a day. Many people on the board are also into a host of other nutritional supplements, while others are getting ketamine infusions, but those I'm told, sadly, are NOT available in the UK.

Good luck and stay in touch!

Mike

Hi,
 

I am hoping that you are feeling better tonight. I do know that nights can be hard on us too with RSD. I know they are on me.

Let us know how you are doing.

Ada

Re
 

Hi there,
I am so sorry to hear that you are having trouble with your pain. I too have balance problems, this started after a guanethidine nerve block.
I have tried the TENS machine, but it did not work for me. We had the machine set to the highest setting, which was 20, and I could not feel it, although I had a lot of pain due to my RSD/CRPS.
Everyone is different with RSD, but please remember RSD is the worst pain you can every experience according to the McGill pain scale, so it will hurt a hell of a lot.
I hope things look up for you.
if you want to talk I am here.
Pain free hugs
Alison

im feeling alot better today, the pain hasnt been so bad and constant.
the colour of my leg keeps changing but i know thats to be expected.
thankyou so much to everyone who has took the time to reply with kind words.
its just wait and see what tomorrow brings at the hospital.

I am glad things are a bit better for you today and much luck for your hospital visit tomorrow.
Take care
Tayla:hug:

ive had physio today which went well, i also have a bone scan on friday morning.
but the pain is alot better and im feeling better