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TKR TKR with Fibro and Raynauds and RA, anyone else?

Jockette said:
mendogal said:
Every now and then a post will get lost as others get added afterwards and for some reason I didn't get a notification of you pinging me.
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@beralc I’m just reading your post now, as I also didn’t get a notification that you tagged me. I’m so sorry for replying so late.

You have gotten very good replies and I really don't have anything else to add, other than it took me a couple of weeks to be able to get my log leg up on my bed myself, but then it just happened one day. And, I do remember getting up, one of the first days, and the pain in my leg felt like liquid fire running down my leg!

Also, keep in mind that the post op blues can happen here and there, for a while. Hang in there, it’s very early days for you. :console2:

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Post op blues is a reality - be prepared for it

Post op blues is feeling depressed, weepy, nervy, shaky, fearful of the future, anxious, overwhelmed by what is happening to you, convinced it's never going to get any better and finally, uttering that most intense of all cries "I wish I never had this done!" It arises out of a variety of...
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Unfortunately today I recognise exactly what you mean here. It either feels like liquid fire or liquid ice can’t decide which but it absolutely takes all my strength to keep going. My husband put my socks on and even his fingers touching my skin was dreadful and the continuing after pain too to be breathed through.
Lots of crying today to release it all,but very thankful for my husband who is certainly is carrying out his vows of in sickness and in health and for better for worse and is definitely supporting me with his words of encouragement and his looking to all my needs ❤️.

It’s a really tough road but I remind myself of all those who’ve done this journey before me,like all of you and thank them for helping those who come behind.
 
@beralc There have been many supportive posts to you, absolutely fabulous that we are all here for one another so all I will add now, stay positive, accept the downdays, cry whenever you need (I did this morning because I managed to get leg over into bath for a shower!!! Help from hubby, I sobbed) and that word again, ACCEPT, something that I've been finding so flipping hard. We are in this journey, long road but now and then the ice cream van is there, stop off and enjoy. Wish you and everyone of us well x
 
beralc said:
but very thankful for my husband who is certainly is carrying out his vows of in sickness and in health and for better for worse and is definitely supporting me with his words of encouragement and his looking to all my needs ❤️.
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My husband was just like that, too. :roseshwr:
 
Andypandy said:
@beralc There have been many supportive posts to you, absolutely fabulous that we are all here for one another so all I will add now, stay positive, accept the downdays, cry whenever you need (I did this morning because I managed to get leg over into bath for a shower!!! Help from hubby, I sobbed) and that word again, ACCEPT, something that I've been finding so flipping hard. We are in this journey, long road but now and then the ice cream van is there, stop off and enjoy. Wish you and everyone of us well x
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Thank you. I love the ice cream analogy
I think I’m very good at acceptance. I became unwell and had to give up my job as a midwife when I was in my 30s I’m now in my 60s so I’ve had a long time to develop that skill. I know myself well. I think ill health does that, you soon know your strengths and weaknesses. I’m blessed with inheriting my mother’s stoicism and I know I will cope and deal with the effort and physical strength that’s involved in the TKR recovery. It’s actually the sheer intensity of the pain that has knocked me for six. The OS suggested I may find things more difficult because of the Fibro, although reading many of the posts it feels as though many have experienced this intensity, but it’s hard to know really, I wonder if anyone else has fibromyalgia and other comorbidities and has any thoughts?

I give myself new things to think about in order to move forward. That it’s getting worse because it’s actually getting better. That I’ve survived the last 7 days and will survive the next 7. That I’ve got people here who I can be completely honest with about how I’m feeling and know I’ll receive some great insights and advice. And finally I’m so grateful that my night routine for sleep, seems to be working, which I know for many is an absolute luxury. Thanks again all x
 
Our members who either have fibromyalgia or one of the autoimmune arthritises (RH, psoriatic, etc) do seem to suffer increased knee pain/swelling plus often overall more pain and fatigue due to the surgery (most surgeries!) triggering a reaction.
Another reason to be extra kind to yourself :friends:
 
beralc said:
I wonder if anyone else has fibromyalgia and other comorbidities and has any thoughts?
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Would you like us to change the title of your thread to say something about fibromyalgia?

You can also do a search for it to find other members who dealt with it.
 
Jockette said:
beralc said:
I wonder if anyone else has fibromyalgia and other comorbidities and has any thoughts?
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Would you like us to change the title of your thread to say something about fibromyalgia?

You can also do a search for it to find other members who dealt with it.
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I think I’ll do a search rather than change the title, but I’ll have a think though and let you know thank you @Jockette
 
Sorry me again! I wanted to know if there’s any place for heat in among all the ice. I realise I wouldn’t be using it on the wound site, but I also suffer from Raynauds syndrome and the pain in my leg reminds me of the type of pain I get from that, but obviously the intensity is far worse. My feet were really troubling me tonight and I used my heat pad on the soles for 10 mins on low and the difference was really quite significant.


I thought I’d better check with you in case there were any contra indications.
 
Welcome back anytime, no worries how often. :wink:
Regarding heat - we advise against using heat at this point as it can increase / enhance pain and swelling. Whereas cold reduces inflammation and swelling, often relieving pain. This is in regard to the incision area and I understand you know not to use it near the wound, but I think I'd avoid nearby areas until swelling has eased substantially. Likely several weeks from now. You can always check with the office of your OS next week and see what they advise.
Wishing you warmth and comfort.
@beralc
 
Thanks for that @Layla. In that case, as I’m not really feeling the relief to my leg when icing,(sometimes the opposite) like I know others do, I think I’ll have to change the frequency and duration of the icing then instead, as you may imagine putting ice on limbs that are already problematic with drops in temperature,it feels as though it’s increasing the associated pain of surgery. Given the significant change I felt in my foot last night from the heat pad I can only surmise the Raynaud’s is having an impact.

Ordinarily I’d be wearing at least 3 layers on my lower limbs specifically in winter, which I can’t do just yet cos of swelling, but I’ll see if there’s something I can wear to at least keep my feet and lower leg much warmer. Thanks again.
 
@beralc Don't know if any help, when we were using the ice machine, I started experiencing horrendous heel pain and then into the foot. Absolutely awful, similar to plantar fasciitis, I have had that in the past , however mentioned on here and @mendogal suggested reducing the ice. Went down to 2 bottles instead of 3 and it really helped. I cut a pair of sweatpants up the inner seam so just able to pull up when icing. Trial and error here and that's why I have been so grateful for bonesmart. Stay warm x
 
Andypandy said:
@beralc Don't know if any help, when we were using the ice machine, I started experiencing horrendous heel pain and then into the foot. Absolutely awful, similar to plantar fasciitis, I have had that in the past , however mentioned on here and @mendogal suggested reducing the ice. Went down to 2 bottles instead of 3 and it really helped. I cut a pair of sweatpants up the inner seam so just able to pull up when icing. Trial and error here and that's why I have been so grateful for bonesmart. Stay warm x
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Ah thanks for your thoughts, yeah I actually saw your post and mentioned to mendogal I was using her suggestion to you and did try putting more layers between the ice wraps and my knee. Although I’ve used ice wraps pre surgery and they have given some relief, I really haven’t had that relief that others talk of with ice,post surgery. This may be because I’ve been trying to ice the knee and the lower thigh and upper calf where the pain is worse and I think for the Raynauds it’s just too much.
I think as said I’ll just have to be more sparing with the duration of icing and frequency because it really is too much and try and keep my general temp as good as possible. If this means it takes longer to get the swelling down, then so be it. Thanks again. ❤️
 
@Jockette @Layla @mendogal
Jockette suggested altering my title to include the fact I have Fibromyalgia in the hope others may add to responses. I think it would be a good idea. The fact it isn’t just the Fibromyalgia that’s having an impact,but also I’ve decided Raynauds is also a problem, (due to icing) I think it would be helpful to change the title, include Fibro and Raynauds in the change please and I have RA too so may as well throw that in for good measure. I’m happy to leave the wording up to you.
 
I have mild Reynauds and get chilblains in cold weather. I don't think I could have tolerated ice packs but I loved my cool water Aircast Cryocuff. I did need to combine it with a hot water bottle on my back though.
I have to be careful about heat on my feet as it can aggravate my chilblains.
I think you will just have to experiment to see what works for you.
Given my really poor circulation- if I ever have to do this again, I will try to choose warmer months.
One thing I found helpful was really soft socks marketed for diabetics. They were really soft and stretchy.They kept my feet warm without pinching and aggravating my swollen, cold feet.
 
EalingGran said:
I have mild Reynauds and get chilblains in cold weather. I don't think I could have tolerated ice packs but I loved my cool water Aircast Cryocuff. I did need to combine it with a hot water bottle on my back though.
I have to be careful about heat on my feet as it can aggravate my chilblains.
I think you will just have to experiment to see what works for you.
Given my really poor circulation- if I ever have to do this again, I will try to choose warmer months.
One thing I found helpful was really soft socks marketed for diabetics. They were really soft and stretchy.They kept my feet warm without pinching and aggravating my swollen, cold feet.
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Thanks for your thoughts. Yeah I’ve been experimenting today with icing and it’s really difficult to even ice for more than 5 minutes without it somehow having an effect on the whole leg and lower back. Interesting I’ve found if I apply my heat pad to the soles of my feet it’s incredibly helpful and calms things down considerably .

I think as you say I’m just going to have to experiment but I can’t see ice being the way forward for me which is difficult given how much emphasis is put on it to reduce swelling, but I honestly could not cope with what was happening.

Oh and I’ll definitely look out the socks thanks.
 
beralc said:
I think as you say I’m just going to have to experiment but I can’t see ice being the way forward for me which is difficult given how much emphasis is put on it to reduce swelling,
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Not all surgeons recommend icing, we had a member somewhat recently, @Nivea, whose surgeon told her not to ice, so she didn’t, and she had a great recovery. Her surgeon also didn’t send patients to PT, he told them to just use the new knee as they were able, as it healed. She did great.
 
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