Hello againI just wondered if anyone who us suffering or suffered from this had swelling which went up and down, temperature changes and skin colour changes and if so how is this treated please?
Also has anyone tried either low level or high level laser treatment and what was the outcome?
Thanks
Les, roughly 2 years ago, I quite suddenly experienced a huge amount of swelling in both legs, particularly my right leg, it was quite astonishing; over a few days, I could not get my shoes on at all anymore - I discovered it was quite clearly related to the Pregablin (Lyrica brand name – very similar to Gabapentin) – if you are on either and you think that might be the cause (I am not a doc and am only describing my own journey, not giving advice at all) then it’s best to do some research both to know more about Pregabalin/Gabapentin and it’s difficult side-affects (simply type them into YouTube search bar for scary vids if you fancy a horror-movie at our own expense) but also to know NOT to jump off quickly, especially if you or others have been on this medication for a while, meaning a few months – what I discovered from others’ journeys was that it was by far best to cut-down slowly. IF this might be of interest, I’ll describe more of my way of cutting down. Again, this is only my experience and may not be the case for you at all but may be of interest to others experiencing swelling in legs/arms.
Hi Les, I have CRPS and had all the symptoms you mention in the past but for a good while now the swelling has been only occasional and moderate, with no reddening or temp rise. There is no standard treatment but plenty of people do recover. Your local NHS pain management service is your best bet in the first instance. I haven't heard of laser treatment for this.
Thanks nice to hear there is hope 🙏
Hi Les,Yes I have all of the symptoms you describe. The symptoms do ease with time but mine have never completely gone away and there are triggers that make them worse such as very hot or cold weather, stress, more activity than normal, less activity etc.
I couldn't cope with gabapentin or pregablin. I take nortriptyline which helps with the everyday pain. Sorry I've never heard of laser treatment for crps.
Best wishes
Jo
Thanks JoThat's really disappointing to know they may never go away
I am trying to stay optimistic and continue with my exercises etc
Hope you may get better soon 🙏
Hi Les, I developed CRPS 3 years ago from a bad fall that I had which I never got treated for even though I broke my ankle. i saw umpteen specialists to get a proper diagnosis , out of 4 consultants 3 told me that I had it and 1 said that I hadn't and because of this 1 person they won't help me with the symptoms. Whenever my ankle/foot swells up especially when I have been walking on it, I have to put my foot up on a pouffe and rest it for a while until the swelling goes down. I was told there is no cure for this and that the pain management team at the hospital can advise you on what to do to ease the pain and swelling. I have not heard of any laser treatment for this. I hope this helps in some small way.
HiThanks for your reply
What did the pain management team recommend for the swelling etc ?
Thanks
I have had CRPS for 8 years now, I still get intermittent swelling & redness on a bad flare. Unfortunately I am one of the unlucky ones that has it full body. Whatever you do Please Don't Use Ice, this can cause a spread of your affected area.
I have been through most medications , awaited clinical trials , but because of the area affected on myself , there isn't much they can do.
If you have it isolated in one area , it may be worth asking your neurologist if they would consider a spinal cord simulator. I have heard of very good results with management if you have one. But as said previously, you may go into remittance, but you will never be cured as of yet, there is no cure for CRPS 😢
I hope you have some joy with your neurologist/ pain management team.
Sending healing thoughts
HelloDid you have high intensity laser and if so how many and which one
I did try one session of low level but I was advised I was trying to do too much and my nerves getting too excited so trying just to slow things down a little
Thanks
I've not heard of laser therapy ( although was told i was on a waiting list for any clinical trials that suit my personal symptoms) Depending on where you are in the country, I would suggest being referred to Bath or The Walton Centre as they both specialise in CRPS I hope this helps x
I live in Durham so a long way away😞😞😞
Les_r28
In UK you can also look up MBST, here you can find a map of all clinics offering that therapy. It is magnetic resonance used for therapeutical purposes (same type as when getting an MRI). It is a therapy that was researched in Germany, available for 20+ years in hundreds of clinics:
mbst.de/mbst-apps/map/index...
Sheffield, Bingham, Burton-On-Trent and Tinwell are the closest to Durham from the map
Smiffy2_75
Please stop telling people "but you will never be cured as of yet, there is no cure for CRPS 😢"
I am recovered! Never believed this nonsense!
I am sorry you did not find a way to improve and probably no proper medical&rehabilitation help. I think at any stage there are ways to improve even though after a certain period of time complete recovery may not be possible, but that is unique to each case, and certainly nobody can issue blanket statements that apply to all CRPS cases.
Some might take some encouragement from this:
rsds.org/wp-content/uploads...
Thank you I will take time to read all this 👍👍
Thanks for sharing wellness1 yes, there are numerous cases posted online that recovered. Here are some more:
Recovered via physiotherapy/hand therapy - CRPS type 2, early treatment: facebook.com/10006373845285...
FB channel of an orthopedic hand surgeon that has special interest in CRPS (Sudeck's dystrophy is an older name for CRPS type 1) with many cases treated: facebook.com/groups/distrof...
Recovered after 27 years (with neurectomy surgery):
CRPS Pain Gone After 27 Years - https : // youtube.com /watch?v=ENrMryV4Xkc&ab_channel=TimTollestrupMD
Some useful links:
Photobiomodulation for Complex Regional Pain Syndrome: A Case Report and Literature Summary lidsen.com/journals/icm/icm....
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coastalcomprehensivecare.co...
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FDA Grants Orphan Drug Status to Soin Therapeutics for Low Dose Naltrexone (LDN) to Treat Complex Regional Pain Syndrome (CRPS) (News)
ldnresearchtrust.org/fda-gr...
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Low-Dose Naltrexone (LDN) for the Treatment of Complex Regional Pain Syndrome (CRPS) is currently enrolling participants.
med.stanford.edu/pain/resea...
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For muscle spasms try magnesium, postassium, calcium. Make sure you are very well hydrated. If those don't help, I've heard others get medication (Baclofen).
If you have poor circulation, some options might be ginkgo biloba extract (there is a medication called Tanakan but not sure if it's called like that in US/UK); omega 3 is also useful; another medication I know others were prescribed is Cilostazol; and another is Pentoxifylline.
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Physiotherapy is very important; my advice is to try at home in small sessions frequently (like every 1-2 hours few minutes), rather than one larger session per day. And listen to your body and how it responds, don't overdo it.
Hi Les I also have CRPS it started in my right foot and ankle but after the almost 15 years I've had it it now has spread up to my hip on the right leg and now in my left leg up to the knee my feet and leg swell so severe that I can't bend my ankle to walk flat footed either I have to walk on my toes or crawl I've have a implanted stimulator in my back that only takes the edge of the pain off I sleep with both legs elevated but the swelling is the same in the morning I've done injections, sympathetic nerve blocks and nothing has helped. Tried most of the medications that where mentioned in the comments above either they didn't do anything or I have very bad reactions to them then when the big to do over opioid started I was forced off my meds that helped and I live in pain now and have no quality of life my insurance won't pay for me to try the ketemine infusions so I'm at a standstill if you do try the laser will you let me know if it helped because I will try anything now
Yes I do I get swelling and red Ness and cold for.no.reason aswel
f you are experiencing swelling, temperature changes, and skin color changes that fluctuate, it's important to consult a healthcare professional for a proper evaluation and diagnosis. These symptoms could be indicative of various underlying conditions, and the appropriate treatment will depend on the specific cause. However, I can provide some general information about potential causes and treatment options:
Circulatory or vascular disorders Conditions such as peripheral artery disease, deep vein thrombosis, or Raynaud's disease can cause changes in skin color, temperature, and swelling. Treatment options may include medications to improve blood flow, lifestyle modifications (e.g., exercise, smoking cessation), or surgical interventions, depending on the specific condition.
Allergic reactions Allergic reactions to certain substances, medications, or foods can cause localized swelling, redness, and changes in skin color. Antihistamines or corticosteroids may be prescribed to alleviate symptoms, along with identifying and avoiding the allergen triggering the reaction.
Complex regional pain syndrome and passing water problems linked? 
Chronic regional Pain Syndrome (CRPS)
Is Chronic Pain Syndrome the same thing as Complex Regional Pain Syndrome?
Is Chronic Pain Syndrome the same as Chronic Regional Pain Syndrome?
Broken wrist and fractured hand.Chronic Regional Pain,Carpul Tunnel Syndrome!
