[JoannaP79]

Hi all, my triceps biopsy came back clear. My neuro is convinced that there is not a primary muscle disease going on. I asked him to look at my very thin thighs and he agreed they were very slim but again said he still believed as above that this not the result of a primary muscle disease. Wish I had had biopsy on leg but for now I have other issues regarding my face.

For now the big issue for me is facial pain. This tops the nerve pain anywhere and has left me housebound and wanting to sleep for the most part. Not only is it awful burning on my skin I feel deeper nerve pain within my sinus canals which feels absolutely hideous. My face is really getting hammered badly for some reason right now. The skin on my face is getting more of a grey pallour like the rest of me with a dry crusty film over it. It's very distressing as I can see my face looking a right mess lately as well as feeling it. I'm too scared to be in the sun because of it so won't go out in the day.
Can anyone offer any advice on what to do to help face skin affected like this. I put olive oil all over it this weekend but it just brought out loads of pimples. Any creams I put on my face stings so bad. All products are racked with chemicals. I want to try help my face skin stay moist without harming it. I want some colour back but don't see that happening as I see the rest of my skin has stayed grey/white.
Can anyone advise what may help with keeping the skin as protected on my face as possible without hurting it? I really worry the deeper nerve pain in sinuses is the start of trigeminal neuralgia

[en bloc]

Did you discuss the facial pain with the neuro? Did he suggest the trigeminal neuralgia? If so, did he offer any treatment options?

So sorry the muscle biopsy didn't pan out any useful information. I was hoping they would biopsy the leg...since that is where you have the muscle wasting.

Have you tried physical therapy to build muscle in your legs?

[JoannaP79]

Originally Posted by en bloc

Did you discuss the facial pain with the neuro? Did he suggest the trigeminal neuralgia? If so, did he offer any treatment options?

So sorry the muscle biopsy didn't pan out any useful information. I was hoping they would biopsy the leg...since that is where you have the muscle wasting.

Have you tried physical therapy to build muscle in your legs?

Thanks for your reply en bloc. I don't know why I went along with triceps but the surgeon and neuro both explained that triceps was a good place to sample when looking at systemic weakness/primary muscle disease. I asked whether denervation of muscle is classed as primary muscle disease and he said yes. I still believe that some muscles can show denervation and others might not so for that reason wish I'd gone with legs where it is worse. I was too scared because even touching my legs hurts like hell. I asked if he'd support leg biopsy and he would but was insistent he still didn't feel this was a primary muscle issue! I have much slimmer arms and they are very weak yet that muscle was clear. I'm confused buy I may go back and ask for the leg biopsy.

I now feel convinced I do have ehlers danlos syndrome. I'm booked in to see a specialist in June in order to investigate this and hopefully confirm my diagnosis. I joined a Facebook group recently and alot of people have all the issues I have including neurological issues. I am very hypermobile and just didn't realise how much I differed from regular people until I started looking into this recently. Because collagen is everywhere in your body, even your nerves, everything can be affected. The defective collagen is due to a gene defect. There would be no treatment for any of this with EDS as the cause which is devastating to be honest.

When I told neuro about pain including face pain he suggested gabapentin and upping the dose and I just switched off. I've managed to reduce it to help sedation so this isn't much of an option. I am going to go back to the neuro ref this face pain as it's debilitating beyond words now and getting worse.

Does anyone have any advice about what to put on ones face topically? It's as dry as a lizard but is very sensitive to creams and stings horribly if I put cream on. I need to protect it from the elements as it's so delicate to the sun and wind. Has anyone tried anything for a badly affected sfn face?!

[Littlepaw]

Hi Joanna,

I recently turned my sister on to Vanicream products. They may be worth a try for you. She has PN and was having skin itching and burning that was unrelenting with other products. After a few days of use and avoiding irritants she has had substantial relief. I started using it at the recommendation of my dermatologist due to sensitive, over-reactive skin and was glad it helped calm hers as well.

Vanicream makes a light lotion which is suitable for anywhere including the face, a heavier cream, soap and sunscreen. You can find these at most drug stores.

I hope you get relief soon,

[JoannaP79]

Originally Posted by Littlepaw

Hi Joanna,

I recently turned my sister on to Vanicream products. They may be worth a try for you. She has PN and was having skin itching and burning that was unrelenting with other products. After a few days of use and avoiding irritants she has had substantial relief. I started using it at the recommendation of my dermatologist due to sensitive, over-reactive skin and was glad it helped calm hers as well.

Vanicream makes a light lotion which is suitable for anywhere including the face, a heavier cream, soap and sunscreen. You can find these at most drug stores.

I hope you get relief soon,

Littlepaw thank you so much for the recommendation. Thank God it has eased off the last few weeks. But I know it can and will come back at any moment so will be looking online for this. I've been using pure olive oil again which has helped alot with dryness.

[Zatochi]

Originally Posted by JoannaP79

For now the big issue for me is facial pain. This tops the nerve pain anywhere and has left me housebound and wanting to sleep for the most part. Not only is it awful burning on my skin I feel deeper nerve pain within my sinus canals which feels absolutely hideous. I really worry the deeper nerve pain in sinuses is the start of trigeminal neuralgia

Hello Joanna,

As a survivor of Trigeminal Neuralgia, it doesn't sound like TN to me but I'm not an expert or a doctor. My TN consisted of random severe electrical shocks in my right cheek, right pallette and right side of my lips. Once you experience it, you'll never forget it. As the TN Wiki says, "Worst pain known to man". There are 2 types of TN, Typical and Atypical. Mine was Typical and I suppose you might have Atypical but from I've read most people with Atypical have burning sensations in their gums and pain like a severe toothache. Most people have TN on one side of the face or the other but there are a very small amount of people that have it on both sides of the face.

You can read more here....

Facial Pain, Trigeminal Neuralgia

Here is a link to the Wiki page.

Trigeminal neuralgia - Wikipedia

Thank god there was surgery called MVD (Microvascular decompression) available for me but as far as I know it only helps people with Typical TN. Literally saved my life.

Not sure if this helps.....

[JoannaP79]

Originally Posted by Zatochi

Hello Joanna,

As a survivor of Trigeminal Neuralgia, it doesn't sound like TN to me but I'm not an expert or a doctor. My TN consisted of random severe electrical shocks in my right cheek, right pallette and right side of my lips. Once you experience it, you'll never forget it. As the TN Wiki says, "Worst pain known to man". There are 2 types of TN, Typical and Atypical. Mine was Typical and I suppose you might have Atypical but from I've read most people with Atypical have burning sensations in their gums and pain like a severe toothache. Most people have TN on one side of the face or the other but there are a very small amount of people that have it on both sides of the face.

You can read more here....

Facial Pain, Trigeminal Neuralgia

Here is a link to the Wiki page.

Trigeminal neuralgia - Wikipedia

Thank god there was surgery called MVD (Microvascular decompression) available for me but as far as I know it only helps people with Typical TN. Literally saved my life.

Not sure if this helps.....

Thank you for your message and the links. I agree that at this time it isn't likely to be the trigeminal nerve. The pain when it attacks is constant and although horrific I understand the lightning shocks from trigeminal neuralgia are unmistakeable.

I'm really pleased you have relief from this horrible thing following the procedure. I appreciate your take on this, thank you

[ellsac]

Hi Joanna

I haven't been on here in a while. It is likely that I myself also have EDS, although it was never confirmed. I gave up on the doctor train, because even if it was EDS, there wouldn't be much they can do for me. I am fair skinned, hypermobile, SFN, other autoimmune illnesses. I'm negative for every known cause of SFM. My pain has diminished greatly, though, most likely due to the nerves having died off. I have lost a lot of sensitivity all over. I did have muscle changes, but was negative for all muscle disease and motor neuropathy. The muscle stuff comes and goes, and exercise has helped, but it takes patience and had to be gentle and slow build up or I'd be riddled with twitches and cramps.

When my SFN came roaring to life a few years ago, my skin changed freakishly and dramatically as well. That as the scariest part for me. I could see all my veins like a road map, and my skin got see through and is more delicate. It does seem to have slowed down a bit, but it is still there. I had tons of pain at this point, and my skin was very sensitive in general, so I started making my own skin products. I know it takes time and some $ to do this, but it isn't as expensive as you'd think once you have the ingredients, and you can control the ingredients for you. If you want, I can PM you some recipes I use. They did help keep my skin calm, and improved the texture. My skin may have been a mess, but at least it was soft and looked nice to others haha. Small bright spot, I know, but I guess you take what you can get.

[ellsac]

Oh and I had a bout of face pain also-deep in the face, sharp shocks in the sinuses, pains on the scalp, in the eye sockets, up my nose. I'm not sure it was TN, because it wasn't debilitating-it was painful, but manageable. So it may not be the same thing.

[bluesfan]

Hi ellsac

Nice to see you back - I'd been wondering how you were getting on. Have you found any effective (or semi-effective) pain relief meds that you're able to take that don't interact with the Hydrocortisone you take for Addisons?

I've been trying to find something for severe lumbar spine pain (bulging discs, twisted spinal cord cover? and arthritis). Have trialed Low Dose Naltrexone (it reduced the efficacy of Hydrocortisone so I had to stop) and more recently I tried Gabapentin but the side effects at only 100mg dose meant I couldn't continue.