CBT for Erythromelalgia-Has it Helped you?

[skylark15]

Hello, community.

I have lupus, Raynaud's, peripheral neuropathy and erythromelalgia, as well as a type of muscular dystrophy. I take Hydroxychloroquine, Pregabalin, Losartan (for the Raynaud's) and Fexofenadine.

My reheumatologist has suggested CBT to help me deal with the agony of erythromelalgia, which disrupts my sleep every night and doesn't settle down with standard painkillers.

I haven't had an appointment through yet but I'd be really interested to hear if anyone else has tried CBT or any other "talking therapy" to help with managing such pain. Thank you.

[maye1]

Hi Skylark,

I don’t have Erythromelalgia but I do see a therapist for CBT. I like it because it’s s tool to address symptoms. It makes me aware of habitual thought patterns, and then I challenge them with new ones. The therapist helps me in that process and I find I’m now able to also do it on my own.

If you’re on the fence considering, I say go for it! Xx

[skylark15 in reply to maye1]

Hi, maye1.

Thank you for your kind & encouraging reply.

I'm glad you find CBT helpful and it does sound exactly what I need. I'll jump down off the fence forthwith!

Xx

[Roarah]

I have mindful CBT to address my heightened anxiety and PTSD and Act to address post stroke centralized pain. Both have been so helpful in my recovery and have restored my quality of life greatly. The ACT has really helped me handle pain much better. I can not take any NSAIDs due to blood thinners but I have not felt like I even need them anymore.

I also accredit my lower inflammatory markers to my mindful meditation. There is proof that CBT, mindfulness and meditation not only shrink the amygdala while thickening the cortex but they actually lower inflammation in the brain and the body. I think this is why these therapies work so well in lessening anxiety and pain while also strengthening memory and concentration.

I think it is worth trying. Good luck!

[skylark15 in reply to Roarah]

Hi, Roarah.

Wow, that sounds a lot to be dealing with.

I will read up on the brain science associated with these therapies; thank you for your clear explanation of it. Also, I'll look up ACT. I haven't heard of that.

TBH, I have always fought shy of meditation & mindfulness but I'm desperate for any way to lessen the pain in my feet. If the strategies will help with memory & concentration in everyday life too, then that'll be most welcome!

Thank you.

Xx

[Roarah in reply to skylark15]

ACT is acceptance and commitment therapy and is a form of CBT often tried on chronic pain patients. As Barnclown points out a great therapist relationship is key as well as practice.

Although, There are limited pharmaceutical options sadly for nerve pain, Amytriptaline and some epilepsy drugs work well for many. I think the effective drugs help by damping down the same areas of the brain and lowering glial activity, thus lowering brain inflammation, as medatation does. The yogi walking across hot coals is due to shutting down the pain center of the brain.

I hope you are able to find help either through meds or mindful CBT to relieve your suffering.

Good luck. Xo

[skylark15 in reply to Roarah]

Thanks, Roarah, for explaining what the initials ACT stand for; that's really useful. It will help me focus my research into local therapists.

I take Pregabalin but not at maximum dose because I'm nervous of a hangover effect the next day. It's main effect is to help me to get back to sleep during the night, once the pain and heat and swelling of my feet have all calmed down. The sensation is not unlike what I imagine the inexperienced fire-walkers must feel!

Xx

[EOLHPC]

😍👋👋👋👋 Yes: CBT definitely helps me 24/7 - with everything...literally all aspects of life, especially this crazy 🦓 life we lead...

CBT has been helping me for many years...and continues to amaze me: the ways CBT helps me seem to develop strength with practice, eg during this long drawn out post spine surgery recovery my long-time EM (simultaneous with raynauds) has been flaring worse than ever before and i’m actually amazed that CBT has helped me come up with creative new practical coping tricks - 🤷🏼‍♀️ why haven’t i dreamt these up before...well, who cares: now i have!

I learned CBT techniques in the course of many years’ sessions with my psychosynthesis therapist (who is also my Alexander Technique teacher)...as with all self help techniques, my experience is that when the chemistry between me & any ‘helper’ is good, benefits are greater. I hope the chemistry is good with your therapist

❤️🍀❤️🍀❤️🍀 Coco

PS Psychosynthesis & Alexander combine so well with CBT for me...i can’t recommend this synthesis enough

[honeybug in reply to EOLHPC]

Xxx 😊🙏🤗♥️🥰👼🕊

[skylark15 in reply to EOLHPC]

Dear Coco,

Thank you for your wholehearted recommendation of CBT. I'm really glad that it's helping with a prolonged flare of EM during your recuperation from spinal surgery. I'm not sure how mobile you are at the moment and I know that balance and lack of proprioception is a problem for you but even though I have the same irritating combination, along with increasing muscle weakness because of the MD, if I couldn't get out of bed and walk around on cool stone floors during the night, I'd be a very unhappy bunny. That strategy and training a fan on my feet during the hottest nights, seem to be the best ways I've found so far. However, the ringing endorsements I'm getting for CBT, ACT (??), mindfulness and now of pychosynthesis and Alexander technique (more research topics for me!), have given me the necessary push to stop saying to myself: "Oh, I haven't got time to do that" and find a local therapists.

We were lucky enough to hear Edwyn Collins playing in Bristol last night. It was simply breathtaking. His singing has improved further since we saw him last, which was only a few years after his catastrophic strokes and with his brilliant backing band, it was a fabulous evening. The story of his recovery and last night's performance is a real inspiration. However, for the first time since my MD diagnosis, I found myself envying a woman in a wheelchair. My lower back aches terribly when I stand or walk for any length of time because the axial, support muscles have degenerated further, making it impossible for me to stand or walk upright, so the spine is forced into an exaggerated lumbar lordosis. Luckily, I could still hear the music, even when I folded in the middle to ease the pain and dangled my arms down. I wish I had emoticons to use on my laptop; I'm sure there'd be some appropriate ones for this. Insert smiley face here.

XXXX Tess

[EOLHPC in reply to skylark15]

You’re v welcome dear tess...for me, the compound progressive & debilitation were too much, especially inadequately diagnosed for decades... am not tough physically or mentally: i know i wouldn’t be here now had i not searched out the right help...and taken to Alexander + phsycosynthesis + CBT (i’ve always meditated too...since my hippie teens 😉)....this life is too way tough 🤦🏼‍♀️...i aspire to the special resilience of folk like edwyn collins: even a bit of that is better than none 💁🏼‍♀️...thanks for describing that wonderful concert...am so glad you were there. And, as much as another can, i do relate to your envy of the wheelchair woman...i’ve been hugely thankful for them over the years, myself

i just wish there’s a way to 💫 magic all this away for us 🦓s...especially the severe MD you’re enduring..and the EM 🤦🏼‍♀️...me too: fan at the foot of my bed...just reading your descrip of padding about on cool floors feels wonderful...haven’t been able to walk barefoot for many years due to equinus contracture etc, but: oh how i long to when the EM is bad - the closest i can come is trad birkenstocks (the foot beds give me just enough support so long as i’m not weight beating for too long... + the footbeds tend to be fairly cool - especially if i swap between 2 pairs. I’ve been sleeping with my feet & hands stuck out of the bedding for years, but it was only this summer on ward post op when i figured out i needed to leave all the bedding untucked in so i can pull it all right off my feet up to my calves: this + the fan + 2 pairs of birkenstocks = Eureka 😆

Thanks for your thoughtfulness re my spine op recovery...the biggest challenge has been coping after the on ward IV opiate induced bowel obstruction meant no analgesics other than paracetamol. Especially as the shingles means i’ve had to pause myco, which has always had analgesic effects for me. But my daily 10mg pred + 3-weekly IVIG are helping. tomorrow i’m reviewed by neurosurgery: that’ll be ‘interesting’...they expect my recovery to take 12 months, which i now feel makes sense cause even slight physio sets me back (i’ve got in with 2 senior spine rehab physios) ...clearly there is a lot more healing needs to go on in there.

Are your consultants looking at the possibility of IVIG for you?

🤗 Sending you LOTS of ❤️🍀❤️🍀❤️🍀❤️

[skylark15 in reply to EOLHPC]

Dear Coco,

Thanks for your reply and good wishes.

I feel that I'm right at the beginning of the diagnostic journey, particularly with possible GI involvement😟.

However, most of the lupus-related symptoms that have made their presence known, are under good control. So far, there has been no discussion of IVIG.

Sending you gentle hugs and...

🍀🍀🍀💛💛💛!

Tess xx

[EOLHPC in reply to skylark15]

I love your attitude & am glad the lupus is behaving!

For what it’s worth:

My 3-weekly IVIG is prescribed by immunology for my Primary Immunodeficiency Disease (a CVID type of PID named panhypogammaglobulinaemia)...and IVIG is also prescribed to treat neuro conditions, but at a higher dose than PID patients get. We HOPE even low dose IVIG may help damp down the progression of the v early onset AID/PID/hEDS neuromuscular debilitation which has landed me as i am now, in Intestinal Failure...it’s now 18 months i’ve been unable to tolerate or digest food of any kind, so am on long term Elemental Enteral Nutrition predigested amino acids

Here’s mention of IVIG re a type of MD:

kumc.edu/Documents/neurolog...

🍀❤️🍀❤️🍀❤️

[skylark15 in reply to EOLHPC]

Thanks, Coco, for the clear summary of how you ended up on IVIG and the EEN. I'll check the link this evening.

At the moment, we're staying with a couple of friends in Rosslyn Castle (scarily ruinous!) & will visit the chapel (of Da Vinci Code fame) today.

Tess xx

[EOLHPC in reply to skylark15]

😯. WOWOW sounds GREAT 👏👏👏👏❤️🍀

[maye1]

Lol good! Off the fence!

I haven’t used it for pain or insomnia but I’ve been using it - with good effect - for depression. Read a study that CBT is 3x more effective than antidepressants for reactive depression (which is probably what most of us here deal with versus primary depression).

I am registered for a workshop for insomnia and CBT 🤞.

I hope it goes really well for you!

[skylark15 in reply to maye1]

Thanks, maye1!

I hope there are similar workshops around here: I agree with you about the reactive depression. I have anxiety issues as well, so hopefully, several birds will be at least stunned with just a couple of new (for me) therapies.

Best wishes,

Xx

[maye1]

I have anxiety too. Very very common with Lupus. It’s the ANS - it’s physiological - but we do what we can to manage it. Xx

[Jmiller623]

Hi Skylark! I think CBT is wonderful especially when going through the rougher times. Its cathartic to express and work through the frustrations and pain we deal with on a daily basis.

Something interesting. I do get erythomelagia especially around my cycle. I also noticed that it’s worse when my blood pressure is high and this may be a consequence of pain/anxiety. I think biofeedback and mindfulness are great skills to learn as they help you become aware of your body’s heightened state with clear physical signs that you need relief from the anxiety you are feeling. This is hard to do since the whole situation results in a snowballing effect/chicken and the egg.

Mindfulness with breathing exercises and literally training yourself to calm your body down is something I’ve done for many years before it was deemed biofeedback therapy. Remembering that what you feel is merely an electronic signal from your body to your brain is simplistic but also empowering. I am also a denialist at times and I know we all feel things differently.

For example: One simple technique is the 4/6 breathing which stimulates the vagal nerve and drops your blood pressure. Finding a quiet space to do 10 rounds of these helps a little in times of need.

CBT is good but the real work begins at home. Just wondering how have you been tolerating the pregabalin? This can also have some weird side effects.

[skylark15 in reply to Jmiller623]

Hi, jm623.

This is immensely helpful, thank you!

Full disclosure here: I have been going for personal psychotherapy for about 3 years and the (wonderful) therapist has been recommending mindfulness, meditation and explained to me the important link between the body & the mind. She has taught me how to recognise the signs, in my breathing pattern, when I get anxious or distressed and how to come back down from that heightened level of alert.

It is interesting to hear that you have recognised an association between high BP, your menstrual cycle and episodes of worse EM. Hmmmm. I'll think about that.

Re Pregabalin: I didn't notice any side effects.

Thanks again.

Tess