Good Lord another symptom… neuropathic itch/neurodermatitis… calling all fibromyalgia people to weigh in please!

[FallingInReverse]

I have one single spot on my thigh that itches. It’s recurring, constant when it pops up, then goes away and I forget about it until it comes back. No redness, no rash. There are zero physical signs of anything different on the one spot.Noticed it at least a month ago, can’t recall if it’s been there before.

So I googled it.

verywellhealth.com/recurrin...

It feels accurate to say it’s nerve related.

followed my search to this:

verywellhealth.com/extreme-...

I have no pain points, but of my dwindling Thyroid symptoms these are left and overlap with what I’m reading: fatigue is getting worse recently, brain fog is blending with the emotional stress of this debilitating/limiting endless continuation of symptoms, and recently the waking-up-puffy-and-tired is on my short list to deal with i think with some cortisol/adrenal testing or whatever (once I fix my brand new iron anemia. Which as I eat more iron rich foods I’m now gaining weight too) (oh and I’m pretty sure I’m quickly flipping to active menopause as we speak this month.) Welcome to 50, isn’t it great.

So - for all you who were misdiagnosed or diagnosed with fibromyalgia and therefore know a thing or two about it.

Can I ignore the itch for now? Or do I have to get a jumpstart on tackling the underlying cause of this new symptom now?

[Kimmi01]

Hello falling in reverse (fantastic name!), I have been trying to treat my Fibro for over 10 years and finally have a balance which seems to work well. Pregabalin, turmeric and black pepper, viviscal, b12, D, and focussed on nutrition. My thigh has a repeated burning sensation just above the knee. I’ve had it on and off for about 30 years now. I’ve just got used to it being there. I’m 54 and post menopausal now - that’s a blessing. So now focusing on the thyroid.

[Star13]

you have to remember that Fibro is a syndrome. Another name is Central Sensitivity Syndrome, so describes well when your Central nervous system becomes over sensitised.

This means a whole bunch of symptoms, sometimes together and sometimes on their own. The key is to try and calm the system down. This gets difficult when you have other conditions playing into things. Think of it as a spinning wheel. In order to keep the wheel spinning you have to keep feeding it. To make it stop and slow down you have to start removing each issue one by one and then gradually the top will slow and then topple over and stop.

Try and identify which are the things, stress, sleep, pain, vitamin deficiencies, underactive thyroid, may be a need for HRT etc to help calm down your system and then your “Fibro” will be a lot better controlled.

[FallingInReverse]

Thank you Kimmi01 and Star13 !

Kimmi, I just started tracking a cold patch that comes and goes on my thigh also! Didn’t connect it to the itch- but I guess it’s all related after all.

And for you both - I guess I don’t need to “do” anything (other than optimize my thyroid and manage stress). I want to make sure I shouldn’t be treating something now, to avoid it from getting worse than it needs to be.

One itch and a cold patch aren’t a problem.

It’s the doomsday thinking of how bad it will get. Is it progressive or random?

[Kimmi01 in reply to FallingInReverse]

I think it’s good to be aware of every little change or issue in our body, we do need to be able to track things but it’s very good to also be able to bring your attention back outside your body and focus on nice things, they say laughter and happiness are the best medicine and I am a great believer in this. My therapist gave me a great tool to help me cope and change the pattern of thinking. At night before you sleep, think of the best thing that day - which could be as simple as a catch up conversation with a friend, or found a great series on Netflix. Then when you wake up think of three things you are grateful for. It works well for me x

[FallingInReverse in reply to Kimmi01]

Great timing for this reply, thank you!

The one thing I’ve been consciously aware of recently is being grateful for my family. I’m about 18 months from diagnosis and at the point where I realize and start to adjust (accept?) that it’s taken things from me. So many things.

But then I realize that I still have the most important things - my husband, my daughter, my parents. If someone gave me a choice - my health or my family, I would rather be sick with family vs healthy and alone.

I am so grateful for that.

Your suggestion takes it a step further into the day to day - like, what one thing happened that day to be grateful for. I’ll have to try and do that. Right now I just fall asleep sad, a little scared, and praying.

And here I am waking up… and I think… THREE things to be grateful for. I’m going to have to expand my thinking to find three. I am so focused on the big thing like my family. Or that I’ve managed to keep my job and so far fool everyone. And it takes all my strength to just get up and get my job done, and mdd as my times I fall short. And I’m just so tired and emotionally walking a tight rope, but have no choice but to keep going.

[Kimmi01 in reply to FallingInReverse]

Falling in Reverse, I can completely empathise with everything you’re going through. Sometimes im grateful for the sun or (not very often) the rain 🤣. It’s a lot to process and to overcome mentally as well as dealing with the physical issues. I thought of something else that might be helpful for you. My friend keeps a diary of events, but only the lovely ones and says that by completely ignoring the bad/difficult bits, it makes her smile to look back through. I’m glad you have support, we need to use whatever tools we can to enjoy this life - it’s still so precious x

[FallingInReverse in reply to Kimmi01]

That is a great idea!!!!

I think I’ll find a little paper book vs my usual digital stuff for that.

Only the good stuff! What a great book that will be. Totally going to do it .

[Bertwills]

For all the up to date research and a forum re Fibro, ME, Multiple Chemical Sensitivity etc I really recommend the website Health Rising. There are reports on all the latest research & you can search for treatments etc. I’ve found it very helpful especially since the USA has spent vast amounts of money on research re Long COVID & therefore associated illnesses.

You could ask your question of their forum. It’s a busy one.

Latest suggestion is the use of a nicotine patch to increase energy. I’ve ordered mine but not tried it yet.

[FallingInReverse in reply to Bertwills]

One more reply about nicotine. A family member in my house uses nicotine lozenges.

Pre diagnosis and even now at times, I have used them.

At one point I did the deep dive search on nicotine and thyroid hormones.

And I found one study that indeed indicated that the nicotine molecule does fit in/block the thyroid hormone receptor. Of course I’ll try to find the actual article again, I only found one at the time but it was an nih or similar clinical study.

I treat it like coffee - hours apart from my Levo and stuff. But know when my fatigue and fog is debilitating and I have to do actual thinking work for my job, it gives me an edge.

But something that addictive… I wouldn’t do a patch. In my opinion.

[FallingInReverse in reply to FallingInReverse]

I was just thinking about this post… especially if you have never been a tobacco/nicotine user, I would strongly recommend in no uncertain terms that you do NOT start the nicotine patch simply to combat fatigue.

Nicotine addiction is real and insurmountable. People may quit smoking and wean off nicotine, but your brain will never forget the tug. If you are not addicted now - do not invite that onto yourself. Ultimately it’s not good for you anyway - it’s a stimulant that increases heart rate and anxiety. It might perk you up, but at a terrible psychological cost.

Bertwills also thank you again for your responses here. Life changing for me to understand and start researching what you’ve clued me into. Thank you.

[FallingInReverse in reply to Bertwills]

Bertwills Did you ever do the patch?

Recently I’ve been thinking a lot about the topic of stimulants, and how people like us probably have a complicated relationship with them since fatigue is such a prevalent symptom.

A family member in my house has nicotine lozenges, and I resist them with all my strength but when the chronic fatigue and brain fog becomes a brick wall for getting my job done I grab one. And it works.

You’d think more of us would have more trouble with stimulants, or that I could go to my doctor and get something that would be better (despite the obvious problem with prescription “uppers”!)

But is it better than nicotine? Do more hypo people use it than we think? I never see anyone wrote about ways they tackle the fatigue in the moment.

I’d love to know what you ended up doing!

[Bertwills in reply to FallingInReverse]

Hi, no I didn’t use it! I put them away somewhere safe & forgot them. Interesting to know you can feel nicotine working to give you a boost. I’m not really doing much at the moment. Tried Dr Myhill’s diet & advice with poor results. Low carb diet made me diabetic. Couldn’t face taking some of the supplements DMSO & iodine particularly. Really fatigued at the moment. Don’t know why. Just more of the same, I guess. I could certainly do with a stimulant.

[Bertwills]

I have found that LDN has been effective against many Fibro symptoms. You can self refer to clinic158.com in Glasgow who will organise a consultation with a prescriber. It’s a 3 month process to reach the full dose but I’ve found it very worthwhile. Just remember to frequently test thyroid hormones as it affects them & you’ll likely need to reduce your dose.

[FallingInReverse in reply to Bertwills]

Thanks Bertwills ! Just went over to Health Rising, and what a great resource, just what I need right now!

What’s LDN?

Also - given I have no pain, only one itch : ) and a cold patch, I certainly wouldn’t think to “treat” those. But I guess the question is around the fatigue/fog and morning sluggishness.

* Thyroid - contributor

* Cortisol/adrenal problems - next up for investigation

* And now this

Thoughts on priorities/action plan? Do I ignore the one itch and one cold patch while addressing above? Or might there be value is digging into to Fibro treatments (for the fatigue/fog/morning fatigue) right away. Do fibro treatments even promise to address that. Or are they all about the pain anyway?

[Bertwills in reply to FallingInReverse]

Hi, symptoms of hypothyroidism & fibro are difficult to differentiate. There’s definitely cross over. It’s not all about pain in Fibro treatment.

Some people don’t believe in Fibro & think it’s all hypothyroidism however as you can see from Health Rising there’s more to it than that. Hopefully research will soon really start to pin these tricky illnesses down.

I would encourage you to research Fibro treatments as fatigue etc could be alleviated or reduced quite possibly. Don’t be discouraged by dismissive comments that Fibro & ME are not real. I’ve been helped by lots of different treatments. Maybe try acupuncture or massage for your cold spot

[FallingInReverse in reply to Bertwills]

One more question- and thank you so much.

I am certain that the one itchy spot and one cold patch are nerve related vs any physical or superficial trigger/etc. I am certain that it is a neuropathic itch. I am also seeing this is one symptom of fibro (that does not overlap) with hypo.

therefore - I am guessing it would be trial and error to take a discovery round, and assume that neuropathic itch is indeed fibro, and treat with LDN, as if the causes are fibro, then the LDN has been shown effective against the fatigue/fog that is associated with fibro?

What I love about the hypo is that we understand the mechanism of the T3 precisely. But I think you’re going to tell me that I won’t have that certainty for Fibro? That I won’t know the mechanism of LDN for example and WHY it’s addressing a root cause of nerve damage?

[Bertwills in reply to FallingInReverse]

LDN generally reduces inflammation of all sorts. Nerve pain could well respond to it. All you can do is try it & allow 6 months to see what benefits there have been. It takes 3 to reach the full strength dose.

It can cause stomach upsets. Also bad dreams if taken at night. I use the sublingual drops as my digestion didn’t like it at all.

[FallingInReverse]

also Bertwills appreciate the info and research in your previous posts. Will be reading!

[Bertwills]

Forgot to say that LDN is Low dose naltrexone. Its full strength use is as an antidote to opiates but it’s been discovered that at very low doses it works against many symptoms. Google for more info.