The mean reds

Hey all,

I last posted with updates from my Cryotherapy treatment and how well it was working for me. But since Corona my hospital has said they are not accepting any new appointments for Cryo because of social distancing. Im feeling pretty crappy because all the pain in every joint has come back with vengeance. Last year I was able to do the Camino de Santiago walk. And now I cant even turn over in bed at night to get a drink without that old agony. Even going to the bathroom is hard. Painkillers don’t seem to touch the sides, and I don’t feel like any one understands because on the outside I look ‘normal’. I am so sick of the pain. I have started taking benzos to calm me down a bit. I know this cant carry on. It has been months now and I am just sick of it, exhausted sleepless and unable to do anything. I guess a lot of you will understand how this feels.

I know its a hard disease to diagnose and treat, and I know that I have been incredibly lucky that Cryotherapy is my ‘cure’, so I don’t wanna sound too much like ‘poor me’ when i know there are so many of you out there who have not found your diagnosis/treatment/‘cure’’. But I also feel like you are the only guys that understand this pain and everything that goes along with it.

Best wishes to everyone xx
Cal

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Keep trying. As the cases go down in your area, you’ll likely (hopefully) find that elective procedures will be feasible again. I know that I had surgery in early June in New York (suburbs), so as cases go down it’s reasonable to expect that even high risk procedures will be done once again.

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What a drag, Corona is stopping momentarily Many things. Had found your experience so inspiring was looking into it for Rome sites. In the mean time while waiting for my hospital update appointment have found relief from pain and inflammation attacks ,which have had in spite of medication, by starting again intermittent fasting; did not eat for 2 days then carnivore refeed, repeat for a week or two and my baker cyst went down again
Hope a similar kind of intermediary, complementary solution, can be of help while waiting for more appointments. All the best

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Hi Cal,
I am so sorry for you pain. It is annoying and can lead to all types of other issues. Please remember you are more than the disease. I find that gentle yoga has been extremely helpful. Even if all you can manage any given day is child’s pose, the gentle stretching, deep breathing, and mental focus help to calm the inflammation. Give it about a month and see how you feel.
Hang in there!

Cal, are you on any other meds for PsA? I see from your public profile you mention Mtx, but chances are you need something more effective i.e. a biologic if you’re not on one already.

I know cryotherapy worked wonders for you, I’m tempted myself, but it was never a ‘cure’ and clearly your inverted commas show you know that there is no actual cure. But the biologics do seem to be the most sustainable way of controlling this disease and conventional medicine should still be available to you at this time.

I don’t know if cryotherapy slows the progression of the disease or just provides a massive boost in how one feels overall. I suspect the latter.

Sounds like I’m being a misery-guts but maybe time to widen your approach?

Thanks Stoney. Trying to pick myself up a bit now and also look a bit further afield for clinics that are accepting patients for treatment. Thanks for your support and gentle nudge to get me looking.

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Hi letizia. So funny, I was doing the 5-2 diet before I found Cryo. But I completely forgot about it. I’ve tried so many things over the years I guess you forget sometimes. Great suggestion again. I’ll give it another go! I actually did notice improvements when I did it last time. So I do think there might be something to it. I hope you manage to find Cryo in your area and that it works for you. There are a few different forms of it, so if you ever have any questions then please just ask me. C

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Thank you, I really appreciate you taking the time to write and give me the suggestion. I will do some YouTubing and get my mat out when I’ve got the energy. I think I should try and do something like that and get some movement when I next have a good day. Thanks again. C

Cal, so happy if what am doing will benefit you as much as I found, the stronger the pain the longer the fast and dropping sugar and gluten did great things when could not do meds, another thing I tried, after reading about your experience with crio, has been shock effect on body in nature as much as poss, hanging out 14 hrs at a time in nature in extreme heat and cold regularly every week, cold showers etc, let us know how you get on, all the best

Hi Sybil. Thanks you! Yeah apart from mtx I was also on Apremilast (Otezla). I seem to not have much of a tolerance for these types of medication. My side effects were pretty horrible, I won’t go into details TMI. I also developed problems whilst on them in joints I never had before. But luckily after I stopped (per drs instructions) the new joint pain slowly went away again. I felt really optimistic about them because I read so many posts on here, so it was obviously a blow that I couldn’t tolerate them.

I know there are many other types but the experience I had and the new pain it caused me was so bad it made me want to search for another ‘solution’.

I honestly don’t think even the dr’s fully understand why/how Cryo works for (some) people. My hospital tells me that with no inflammation and symptoms it means there should be no degeneration. Plus I am then able to exercise and strengthen the surrounding supportive muscles/structures which I am told helps also, which I wasn’t able to do with any of my other treatments before Cryo.

I’ve had this since I was 25 ish. And I really wanted there to be a pill to ‘take it away‘. Not least cos let’s face it who really wants to strip off and get into a -110 degree freezer.

There’s always the chance that treatments stop working so I will never say never. If Cryo stops working I would probably try another drug again. But somehow I like that it’s also more natural and I don’t have to fear these short or long term side effects.

It’s definitely not for everyone though. And from the sound of your message it seems that you have had some success with biologics! :slight_smile: awesome you can avoid the deep freeze then. It’s bloody cold!

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Ahh yeah! I did the sugar and gluten thing too. Maybe I should get into that again as well. See since I started Cryo I didn’t have to bother with anything else so I’ve just kind of forgotten it all so these are great reminders and suggestions. I also did acupuncture. Maybe I should try that again although I’m not sure how that works with social distancing:/

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Sugar and gluten have dropped almost 2 years now, told by three doctors to do so, and have not needed knee implants any longer so far, combination of fasting medical treatment and diet, now carnivore. Acupuncture sounds important, something to resume when visits will be’ possibile once again, but fasting phenomenal results for emergency in my case.

It’s all so tricky … can you be sure that you have no inflammation seeing as PsA patients so often show no sign of raised inflammatory markers in blood tests?

I possibly don’t conform to any obvious model of a PsA sufferer. Just got back from clearing someone’s overgrown garden over 3 days - quite heavy labour. Granted, that may not have been possible without biologics but in the years before PsA completely floored me it may have given a reprieve. I really seem to thrive on a high level of physical exertion and to go downhill when I’m at all sedentary.

I guess all I’m saying is that I probably wouldn’t rely on clearing gardens or cryotherapy to pacify PsA. But I can’t know for sure.

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Hi again Cal,

I’m so sorry Covid messed up the cyro for you since it worked so well for you. But just to say there’s a huge amount more meds to treat PsA than just mxt and Otzela. Mxt hated me so we had an incredibly short relationship and given a choice I wouldn’t touch Otzela. Thankfully I was never offered it. But sulfasalazine loved me and presently a biologic called Cosentyx is seriously loving me. I have decent capacity now, take no painkillers and just the occasional anti-inflammatory. And I don’t have to get into a freezer although I’ve loved the thought of that.

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Hey Poo! Aww lovely to hear from you again. I hope life is treating you kindly, it sounds like it is and you have found some your med love match :wink: that’s great!

Yeah I know there are lots more but once bitten twice shy. And if Cryo stops my symptoms, stops flare ups, I see no need To go onto other additional meds. My blood tests while I’m on it look good no inflammation. But yes, since I can’t get it right now it’s obviously a problem. I’m so happy you found the right treatment for you. That’s so awesome.

I’m not a big old hippy or anything (no offence to hippies!) but for me, I also think if it is possible for me to treat my condition with something a bit more ‘natural’ then I personally prefer to avoid any potential side effects or long term problems.

I’m sure/hope if I kissed a few more (Meds) frogs I would find my prince. And I will never say never. Especially as so many of you have had such amazing results from them. I guess my main focus right now is to find any Cryo chamber anywhere in Europe I could go to for a ten day course. And if history repeats itself that’s enough to feel completely normal pain free n healthy for 6-9 months.

In fact as I write this my a friend of mine says she has maybe found one- I’ve got spies everywhere. So fingers crossed it can work out. I also know that just because something has worked in the past Doesn’t mean it will always work in the future so I may have to rethink my treatment options if Cryo does for some reason stop working for me.

Oje the magical mystery tour we are all on to find our best treatment.

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Hey Sybil,

I’m not sure how possible it is to be exactly sure of that. I’m really lucky because I’m my area there is a whole specialist hospital just dedicated to rheumatic diseases. And they do check ups, bloods yes, but also all the scans to check my joints. They also have a Cryo chamber in the hospital, as part of their therapies, and that was how I found it. All my scans show no further deterioration since Cryo and bloods look good. The Dr’s say it is working for me. But I hear your scepticism and I can understand it. Who know with this disease. I suppose it’s possible that they are wrong, I suppose we never really know in that sense maybe.

I know right now there is inflammation, so it’s not great. I won’t be able to wait too much longer if I don’t find Cryo I probably will be forced to take meds again.

I’m not sure what other examinations they could do to check. Bu if you know of any then please let me know and I will ask them. I obviously don’t want it to be progressing in silence.

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I just want to say to everyone, thank you. It is so nice to not feel alone with this and I really appreciate all of your responses and knowledge sharing. What a valuable resource!

For each of you that have found the things that work for you, I find it so beautiful the passion with which you want to share share your experiences and recommendations.

So thanks again.

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