Newly diagnosed with CRPS in lower back/thighs
 

Hi everyone

Today, after four years of "lower back pain with possible radiculopathy", I have been diagnosed with CRPS. My lower back and outer and inner thighs/groin burn all the time and I find underwear and waistbands particularly difficult. It's funny because a lot of the recommendations in the sticky thread are things I've already used without knowing I had CRPS, but I have noticed that most people have it in a limb. I wondered if anyone else had CRPS in their back, and whether they have any tips for me? Bedtime should be restorative and is not for me, I struggle to sleep for more than 2 hours and while lying helps my lower back pain, the burning skin sensations and hands and feet 'falling asleep' are particularly problematic.

Nice to meet you all

Kathy
xx

I have CRPS (RSD) in my back as well as other places. Sleeping was horrible for quite a long time after the RSD first spread and I was only getting at most 15 minutes of sleep at one time for months on end. I went through desensitization therapy for my back and that helped a lot with normalizing the sensation there. There's still pain...but I can tolerate it now. I was put on amitriptyline for a while and that got me at least 3 hours of sleep at a stretch which was MUCH better than what I had been getting before. Then I started doing tDCS therapy and after more than a month of use (I think closer to two months but I'd have to double check my old posts to be sure) I started to sleep better and better. I now am able to normally get 6-8 hours of sleep a night and everything is better for me getting regular sleep and rest. The pain is still there as always...but being rested makes tolerating it so much easier.

I also find hot baths with Epsom salts and lidocaine cream can be big helps (as well as a heating pad to help with the pain) when it comes to my back. I also have Lidoderm patches which I use when the pain is in a particular area vs all over (the cream seems to work better for that...but it does need to be applied more often where the patches can stay on for 12 hours at a time).

Hi catra121

Thank you so much for your post, it's really kind of you to share your experience and ideas.

I have not heard of tDCS before, just googled it and it sounds interesting. I have been accepted onto a UK trial of the Alpha Stim system, which is not the same I know but I am excited to try it and see if it helps (if not I haven't lost anything). TENS works to a degree on me and because of that and my failure with many meds, the neurosurgeon has written to my pain consultant recommending I be considered for the SCS. I am trying not to get my hopes up too much as obviously there are criteria to fill and hoops to jump through over here to get one, and then it might not even help. Still, it's better than nothing to look forward to.

I am currently taking Buprenorphine patches (35mcg), buprenorphine sublingual tablets as "breakthrough" relief (200mcg), pregabalin (450mg) and Cymbalta (60mg). I thought recently that I was tolerant to the buprenorphine, as I had level 7ish pain daily for a while, then was admitted to hospital the week before last in agony. While I was in, they didn't have a patch available and I had to do without for 24 hours (having IV morphine) and towards the end of that period I realised I am not as tolerant as I thought, it's just the pain is worse "underneath". They fiddled with my dosages to what I've listed above (I didn't have any breakthrough meds and they added the sublingual buprenorphine, Cymbalta and upped my pregabalin) and now it's tolerable, although I am still around a 5-6 daily.

In the past I have tried gabapentin and amitriptylene. The gabapentin worked moderately well for a short period, then 'wore off'. Under the GP's direction I would wean off and take breaks from it and start titrating back up again to try and make the most of those initial coverages. Amitriptylene helped me sleep at first before the pain went through it's really bad phase, but again it wore off. Now I only sleep 'properly' if I am knocked out by something stronger - on my current meds I will get up to 2 hours, maybe 3 on a good night at a time. Amitriptylene didn't do anything for the pain (which is what it was prescribed for), so they took me off it. That's when they started me on gabapentin.

I am going to ask the GP about the lidoderm cream, thanks for the tip! I think patches might not be suitable for me given the amount of area that's burning (I presume you apply them to the burning areas?). I'd need a hell of a lot to cover both thighs and my lower back, haha. :D

I'll definitely try the epsom salts too. I'd read about them in other threads and on CRPS websites, and it's such a cheap and easy thing to try that it makes a lot of sense to give it a go. It's good to hear from the horse's mouth that they are actually helpful though, so thank you. This might be a silly question but how much do you use in how much water?

I am so glad you get relief from all the things you mentioned - 6-8 hours sleep sounds like heaven and I know from experience that broken sleep makes everything worse. I am going to look into everything you've mentioned, and thanks again for sharing your experience. :hug:

I was prescribed the amitriptyline for pain too...but it only helped with sleep and only those three hours a night.

Epsom salts...Im sort of bad. I fill up the tub with hot water (not steaming burn yourself hot but as hot as I can tolerate) and then dump a bunch in. Not very scientific, huh? But through trial and error I have learned to gauge the right amount. I think I was told by a physical therapist to do 2 cups though if that helps give you a starting point. Also important for me is to make sure your bathroom is warm because if you get out of a hot tub into a old room that can actually make you hurt worse. So if it's cold in there I will close the door with a space heater on in there for a little while, then turn it off when I go in there to take my bath but keep the door closed to keep it warm.

Lidoderm patches are applied to burning areas but I also sometimes use them in the areas that get the most abuse or that are the most sensitive or get touched the most. One example is that if I am feeling particularly sensitive on the shoulders and need to wear a bra, I will cut a patch in half and place them on my shoulders under the straps. Since I can wear for 12 hours it not only provides a barrier between my shoulders and the straps...but also pain relief. The patches don't make the pain go away but they do take the edge off which sometimes is the difference between tolerable pain and the kind that brings you to your knees.

Good luck with the various trials and things you are trying out. I hope you find some relief soon. If you have any questions about any of the things you are experiencing, please post new threads on here. The people on this site have literally saved my life with the things I have learned. Don't know where I would be without them.

Thanks catra, I really appreciate the help! Although I've had chronic pain for four years plus now, I am still new to learning about CRPS as I didn't really consider it when I was looking into what my problem might be. On the plus side, the neurosurgeon says my spine is fine (which is what I thought the problem was!).

Thanks for the tips on bathing - I am definitely going to give that a go. I have a small bathroom heater I use when my pain is bad or it's cold. It's high up on one of the bathroom walls, so sometimes when I get out of the bath I stand under it and aim my back at it lol. Sounds nuts I know!

I will ask the GP about the patches AND the cream as I think they both sound useful. I don't know what is available over here in that regard yet. I had some EMLA cream in the fridge for my daughter (she is a fainter and needed blood tests) but it's disappeared, must've been thrown out. I *think* you can buy that over the counter rather than needing a prescription, but I will have to check. I think it's 5% lidocaine and has something else in that I can't remember.

Underwear is a nightmare for me, bras make my hands go numb and pants rub my sore thighs and groin. I'm on the lookout for soft, seamless pants but not doing very well over here. I'm not brave enough to go commando!! :eek:

Do you mind me asking if you have mobility problems from your CRPS? I get wobbly legs (I think it's linked to the nerve symptoms in my thighs) and so fall quite often. I was using a normal stick or two elbow crutches until recently, but physiotherapy have just "loaned" me a rollator. I feel about 95 and am mortified using it, but it gets me out.

Many thanks

Kathy
xx

The Top US Specialists have stopped using SCS's a survey found that they caused RSD at the insertion sites in 60% of sufferers. 50% had to have further op's due to moved wires or dead/faulty and 60% of those who didn't have spreads at the first op got them the 2nd or subsequent time. 100% of those who did said it made things even worse.

Thanks for the info Kevscar, do you have the study/studies that those figures are from as it goes against what I have read?

Mobility problems are an issue for me. For about a year I couldn't walk or stand at all (that was when the RSD spread to my back and upper body). I did many months of physical therapy and now I use a rollator (I'm only 29). It feels awkward sometimes to be using one at my age (especially when old people try to take it away from me at work because they think it must be for customers...lol). But honestly you get used to it and it has made my quality of life SO much better because it allows me a freedom of movement and activity that a cane or crutches don't. I can carry things with it, always have a chair with me, can kneel on it so both hands are free (wheels locked of course), and any number of other things that are not possible when I use a cane. It helps the pain so much and the balance too (I have bad balance and a tendency to fall ever since the spread). That said...over time I have been able to walk around the house a little either without anything to assist (for very short periods) or with just a cane. I have to hug walls and furniture if I do this so I have something to touch for support if I need it...but even that little bit of freedom where I don't have to use anything makes me feel good emotionally.

Another benefit to the rollator that I have found is that people don't bump into me and give me lots of space when I am in a public place. Even with a cane or crutches people had a tendency to get too close or trip over the cane/crutches...but with the rollator they give me lots of room. It creates a bubble around me and that is huge when you are out in the masses of people. And my walking gait is SO much better with the rollator. It's amazing how badly you walk with crutches or even a cane sometimes because it's not a "normal" walking motion and you can mess up other parts of your body by not walking correctly. I have found everything is much better off with the rollator because I was able to focus on walking better when I started using it as part of my therapy. I can walk at a better pace with it too because I feel more stable where as with a cane or crutches I have to go very slow and take very deliberate steps.

So as awkward as it might seem to use a rollator at your age (whatever that might be) I would say the benefits FAR outweigh and awkwardness. Mine has given me my life back and allowed me to return to work full time in the same position I had prior to RSD (I had to take a year and a half off when I couldn't walk after the spread of my RSD). I was able to order mine off of amazon.com and got one with bigger wheels (8 inch...better for bumpy and uneven surfaces), one that was made for shorter people (as I am only 5ft tall), one with a canvas basket (so I don't have to remove it to fold it up and put in the car), and one in pink (just because it makes me feel better to have one in a brighter cheery color). It's truly worked out great and I only rarely am made to feel weird about having one. Most people I work with say they don't even notice the thing anymore because I am able to do my job (and better than most). The other day I responded to a customer who had fallen (92 year old woman) and we called the paramedics. While I was waiting there while they questioned the customer and her daughter, the one paramedic pointed to my walker and asked if it was hers (the customer who had fallen). That really made me feel awkward...but I can tell you that this was an example of someone who SHOULD have had a walker and probably didn't use one because she's self conscious (my grandma is like this). We could tell from the video that she was using a shopping cart as a walker and she fell after she took two steps away from it as they were leaving. So sad...I don't know the details but I think she broke her hip falling. So not worth it...much better to be safe and maintain your freedom than feel self conscious about how it looks to have a walker.

Took many months of therapy to get to the point I am at now with the rollator...but it was one of the best things my physical therapist did to help me was recommend it. Good luck.

Hi Kathy.
Im also new to this. Sleep is also a huge issue for me. My RSD started in my left hand and has spread to all limbs to some degree and my left hip and shoulder are also effected. Not sure if its all of my back on the left, it could just be from lying in bed too long, but we will see. The spread is new and im still getting used to it. I hate it!!!:(

I have read that where the nerves reach the brain is an area where things like sleep, focus and short term memory work. I dont understand exactly but it was enough to make me realise why sleep was such an issue even when my pain was under control. and i guess how it spreads. thats the thin everyone does not understand. My injury was in my hand, but its my foot hurting?????:confused: When i have a pain flare i suffer from insomnia. at first i thought it was the pain, but even once thats settled its still the same. How many nights can we go with out sleep????

Im also starting to feel that blankets are too heavy for my left leg and hip. My bedding is quite minimal so its crazy. so far clothing isnt an issue but im only wearing soft cottons. Im scared of not being able to wear bras. Im not built for that.

Im on Amitriptylene and codene but when its bad it seems to be not enough and the Amitriptylene only gave me a good nights sleep the first night. I remember it being heaven. I tryed sleeping pills this week. I hated to go there because an old housemate used to use them to attempt suicide. But i was desprate and I asked the doctor. They didnt do much and i was only falling asleep hours later. Today it was 1.30pm when i managed to wake up and i felt like a zombie. I doubt ill use them again, but who knows. I also felt like my face was swollen and im scared to up my dose, even with consent from the dr.

Im trying to get into see a pain clinic, at first i didnt think i was at the stage of needing one, but I know now i do.

I have tryed Epsom Salt baths and I can say it was lovely and I had a few hours relief. if it wasnt 2am (Australia) and i wouldnt wake everyone up, I would have one now - Im having the worst flare so far. OUCH!!!! I read that lavender and rose hip oil is great in your epsom bath. I think i might have read it on here. Thanks who ever posted that. Its wonderful and smells so soothing. I use a fair amount. I read that it works because the skin absorbs the magnesium and thats what relieves the pain. So i like to use a fair amount. And if you buy in bulk its really cheap.

Diet is another thing you can look at. There are threads on here with information. Gluten free is popular and foods with anti inflamatory properties are good. Also some vitimins like C,D and b12. Plus Amino Acids are apparently a good thing to look into.

I really hope you get some relief. This is such a cruel thing. but lucky we are all in it together and have places like this to chat. I would be lost with out the internet. I hope this makes sence, Im really lacking sleep:eek:

The paper was in a link from Howard Blacks newsletter. Best research sire I have found http://www.thblack.com/links/RSD/index.html

Hey catra - thank you so much for sharing your experience of your rollator, it has really helped put things into perspective for me. Mine is totally rubbish as it has tiny hard wheels and the brakes aren't secure (and so it moves when I sit down), but I am going through the process of deciding whether to buy a better one or wait. I think I'll have to, but the better ones are expensive here and each has its own failing. I want big/soft wheels, decent brakes, good folding capability AND kerb climbing ability. I wrote a review on my blog of my naff one and went through the pros and cons if anyone fancies a read at any point.

Mollymoo - you're amazing, thanks for all the tips on ideas for getting control back. I am so sorry you're having similar problems to me with sleep, I did wonder why on nights when I get my pain to a sleepable level it just doesn't come to me, but your explanation makes a lot of sense. Yes my memory has been effected too - I forgot my address when I was asked for it in the chemist! As for the sleeping tablets, I felt like that today after resorting to my topup medication, and the other week after using diazepam for the spasms. We can't win! :grouphug:

Kev - thanks for that link, it looks like it might turn out to be a good resource from the little I've seen of it so far. I did a search for the SCS on there and got studies suggesting just about every view someone could have on them, including that they mostly work long term, so I think it's the nature of the science beast. The thing I learned on my degree is you can get a study, even a well-backed one, backing just about any viewpoint. I tend to use the medical/psychological databases for searches normally, as although I'm not saying this about the link you've given (I don't know it and so far it appears to have a variety), I have found other sites on other subjects to only list the papers that back their view. I am definitely not downplaying the potential risks and you're right to be cautious, and so I am going to discuss with the pain clinic about their success rates with their patients long term. Thanks again.

I got my rollator from amazon.com and I think the price fluctuated on it from $100-$150 and I paid somewhere in the middle of that. But it was free shipping through amazon which was nice.

With over 120 sites and 100 documents downloaded plus short term memory loss it sometimes takes a while to find things

http://www.rsdinfo.org/CRPS-SCS%20Article.pdf

I wouldn't even bother talking to our lot about RSD, I have been treated by r spoken face to face with 7 specialists including probaly the top 3. None of them had heard of US and Dutch papers I spoke about and they are all at least 20 years behind the rest of the world. The first paper saying gaunethedine blocks were useless for us was published in the US in 1993 and 7 subsequent studies prior to 2000 confirmed this. One so called specialist gave them to me in 2010 and the first UK paper saying useless wasn't published until May last year but there are still Uk sites sayig they should be used http://www.painclinic.org/treatment-...eticblocks.htm

Hi,

Some really useful info and thinking here - so nice to know you're not alone :)

I have had CRPS for nearly two years, and I struggle with getting to sleep as both my feet burn like crazy at night, I have headaches, and my CRPS is throughout my left side so I can't get comfy... Here's a couple of things I try for nights, I get more sleep than I used to.

Traditional meditation I find a bit too serious and I don't get on with it, but I have my own method which works really well... This is tragic I admit, but hey, whatever works lol. I recite (in my head :winky:) an episode of Bagpuss, that I used to watch as a child, and then got for my own children. I know it sounds ridiculous, but it's that slightly hypnotic recitation of something you knew off by heart as a child, that you can visualize, and that your brain associated with relaxation and pleasant thoughts. Seems to work, and as a bonus it distracts me from the pain and makes me smile a bit.

I also open a window and pull the quilt off the sheet an hour before bed, which makes everything nice and cool, and I pull the quilt back off my feet and put a cold faintly damp flannel over my toes. That cools the worst of the burn and with Bagpuss on my side, I get to sleep most nights...

Good luck folks.

Bram.

(There was once a little girl, and her name was Emily. Now Emily had a shop. It was rather an unusual shop, because it didn't sell anything. Everything in that shop was a thing that someone had once lost, and Emily had found, and taken home to Bagpuss. Emily's cat Bagpuss. The most magnificent, the most incredible... saggy old cloth cat in the whole wide world. Now one day, Emily found a thing. She took it home, put it in front of Bagpuss and said some magic words... 'Bagpuss, oh Bagpuss, old fat furry catpuss, wake up and look at this thing that I bring...wake up, be bright, be golden and light...Bagpuss oh hear what I sing.' And Bagpuss woke up. And when Bagpuss wakes up, all his friends wake up too. The mice on the mouse-organ woke up and stretched, Madeleine the rag doll and Gabriel the toad. And Professor Yaffel, an old wooden bookend in the shape of a woodpecker, came down to see what Emily had brought... :wink:)

Oh Bram - you don't half know how to make me feel old, I remember Bagpuss lol! I even have a Bagpuss hot water bottle that talks, yes talks! He says "Oh isn't it awfully nice to have a cuddle". :D

Meditation wise I was taught a method many years ago in counselling while I was at college that involves visualisation (a nice walk up a gentle hill to a meadow with a rucksack of worries that I let go as balloons). Sounds totally hippy and it is really, but it coincides with a physical relaxation routine that used to help back then. I've got to admit I've not used it for pain yet as my concentration when sore is non-existent. :rolleyes:

Your bedtime routine sounds pretty similar to mine, I have to "air" the bed with the window open (which I leave open all night even on coldest nights). While I love the cool sheets on my feet, I can't tolerate cooler so I haven't used the flannel idea. I don't think I have CRPS in my feet at the moment, unless the tendonitis is that.

With bedding I can't win - I love the feel of soft flanelette/brushed cotton sheets but they are too warm and also make my thighs feel even number because they're so soft, which makes me feel sick. Anything rougher doesn't have that effect but obviously irritates the burning sensation in them a bit. The worst sensation is that of "bits" in the bed - crumbs, anything along those lines. I manage ok with normal bedding but I just don't sleep, even when my pain isn't really bad. Last night it was 6am before I nodded off, with the alarm going off at 7am. It's not like I'm not tired either, throughout the day I can barely stay awake and even find myself dreaming! I've tried the old advice of not napping through the day and making sure I have a set routine, no caffeine etc, but I still don't sleep. xxx

Lol, I have a Bagpuss who says "dearest mice, I love you all" when you squeeze his tummy :) awww!

I like the walk idea, might try that one...

The flannel isn't mega cold, I can't tolerate that extreme on my toes, I just use cool water and then wring it out as much as I can, until it's almost dry, then use that. I only use it for a few mins to calm the worst of the burn, then leave my toes in the air for a while...

This is a horrible condition to live with, especially when no one in the house understands it. Sigh.

Bram.

Here's a couple of things that might help

http://www.openfocustraining.co.uk/exercise.html

http://www.paintoolkit.org/assets/do...t-Nov-2012.pdf

Thanks ever so much both of you!

I had a really, really bad night last night. Most of my worst pain before now has been the lower back ache and the spasms that put me in hospital. My "nervy" symptoms (burning, pricking, numbness, etc) have been irritating to sore without being agony, and have always been worst in my outer thighs. I have been pacing myself exercise wise but last night I was under a fair amount of stress/upset that couldn't be avoided. The burning was so bad, well I don't need to tell you what I was thinking as I know most of you will know that already. I took buprenorphine sublingually to try and get the edge off, but it persisted until I couldn't stay awake any longer, which was 8am this morning. I think I only fell asleep as I have only had 2 hours unbroken night-time sleep since Thursday.

I am going to try and get the GP to prescribe the cream, but in the meantime is there another tip anyone can share on alleviating burning sensation? It's not a heat-related issue - they get warm but obviously it's a nerve sensation. It's constant but gets worse and better day to day. I've never had it as bad as last night.

Thanks!