I haven't had a massage since my dx of SFN.

I asked my pain dr about it yesterday during my appointment and he said it was ok to do but it needs to be a 'light' massage and no touching the feet.

I have so much tension in my neck and shoulders that I'm hoping it will help with that.

I'm trying to learn to live with my pain.....it's not easy. Now that I'm off oxycodone I realize how much it was helping.

Right now I'm trying Tylenol 3. Seems to help just a little after an hour. I am going to take one before I go to my massage tomorrow.

I know massage helps some with neuropathy and I've read others say it put them in a flare.

The pain dr keeps pushing the new HF 10 Nervo SCS and wants me to really think about a trial after the first of the year. Just not sure I can go through with another one.

If he would just increase my ER morphine I think it would help me but he says 30 mg twice a day is as high as he can go. Just disappointed in that.

Hope everyone is doing as well as they can.

Debi from Georgia

For me as long as my legs and feet are left alone the rest is fine. I think it would work very well on neck and shoulders. Good luck and please let us know.
Carol

The massage was very nice. My neck, shoulders blades and top of shoulders are a mess but I already knew that

I was so sleepy last night about 8:30 I could not even hold my eyes open any longer.....slept 12 1/2 hours. Only woke up once to use the bathroom and straight back to bed.

I'm pretty sore this morning but I did expect that.

If I can get through this without too much discomfort I'm going back next week and work on my neck/shoulder issues.

My visit yesterday was a gift certificate I received for Mother's Day and they are having a really good deal on 1 hour massages for Nov and Dec.

I'm thinking if I can get that 3 + years of tension out of my neck and shoulders I'm bound to feel better right ?

Debi

Hi Debi, I hope the post-massage muscle pain is better today. Be sure you always stay well hydrated after getting a massage - that will help reduce the "after effects".

I always have those same problems with the neck and shoulders, and I get regular massages that really help. The first time I went, the therapist unexpectedly wrapped my feet in a steaming hot towel (I made sure she understood to never do that again.....) For me, it doesn't directly help my PN pain, but it indirectly helps by reducing my anxiety/stress.

I know they say that stress doesn't actually cause SFN, but mine came on just as I was going through the most stressful time in my life. It wasn't until I found ways to really manage my stress/anxiety (along with other lifestyle improvements) that my symptoms improved.

If you find that the massage helps, try to find a therapist that doesn't charge a fortune so you can afford to go regularly. (Stay away from the fancy salons and spas. I found an excellent therapist who rents a space in the back of a local tanning salon. She gives me an excellent deal if I buy a "12 pack" of massages. It ends up being about 1/3 the price of going to the fancy places - but is just as good.)

Well it's Saturday morning (noon...lol) and I'm feeling pretty good for me.

Yesterday I had to stay in the bed all day long....I felt horrible.....my level of pain wasn't any higher but I just didn't feel well enough to get up and do anything.

My daughter thinks it may be linked to the toxins that are released during a massage....she's probably right from the info I've read on massages.

I have been drinking plenty of fluids....actually I have something to drink with me all the time....been doing that for years.....always something sugar free.

Ragtop......the lady I went to is in with a Chiropractor. They are having a special for Nov and Dec that is $50 for one hour sessions. I think I can handle that for a few weeks to see if it really helps.

I don't expect it to do much for my pain but with all I've been through in the last 3 years I'm in a mess with my anxiety and tension. Agree that if it can help in any way then it's worth it.

I have thought about trying a Chiropractor just to see if my back or hips are out of line. I've heard many people say a few adjustments helped them with their pain.

I know we should not rely on drugs for everything but I do think if my pain dr would just up my ER morphine a little (currently on ER 30 mg 2 x's a day) that I would be in a much better place with my pain.

I've only had one 'high' from a medication and that was the first BuTrans patch I put on.....adult kids laughed at me for an hour or so until my body got adjusted.

The morphine and drugs I've used in the past (hydro and oxycodone) never made me high just brought the pain down a few notches.

My pain dr blames it all on the CDC and the DEA but I think with my documentation of spine issues and severe SFN dx'd through skin biopsy he would be able to cover his booty if ever audited or whatever they call it.

Sorry....didn't mean to get off on all that !

Hope everyone has a good Saturday and Sunday. My day is starting out good so I'm hopeful.

Debi

I have a caution.. a warning for you Debi.

I don't think it is normal to be recovering from that massage the way you describe.

I had a terrible reaction to a massage, terrible pain in my upper spine and neck for 2 days after a light massage. I will never get another.

The anatomy of a massage is this:
The dorsal roots lie outside the spinal column along the vertebral bodies. These roots are part of the peripheral nervous system.
They get damaged by chemo drugs, viruses (the shingles virus lives in them) and toxins. Sometimes they heal up and other times in some people who lack the genetics for this specific repair, never. When they go wonkey eventually the nerves in the periphery die back because they get no answering signals from the dorsal roots. The dorsal roots maintain a feedback loop 24/7 to the nerves in the feet, legs, arms and hands. When this loop is broken the nerve endings in the feet and elsewhere die back.

The massage may put further pressure on these nerve bundles (the roots) and cause further damage. The space around them is tiny... the bony parts of the vertebrae are supposed to protect them. But physical pressure from accidents, falls, or massages, may compress these bundles (ganglions).

Central Nervous System Anatomy — The Spinal Cord
This link shows the position of the dorsal root ganglion (the second diagram) where it is located outside the spinal cord and lodged in between the bones of the spinal column. Movement of this area, pressure, can put strain on those nerves in that bundle. An already damaged area by chemo drugs etc, will react to this negatively depending on the skill of the masseuse.

I would strongly advise you to contact your neurologist and tell him/her the massage made you sick, explain exactly why you had to stay in bed etc. I suspect you will be advised to avoid massages ... but if not you did check for safety reasons and then you can carefully get future ones, after explaining to the masseuse to be very light and careful with you.

As always you provide so much information on any subject we have. You are a blessing.

I have been just a little worried about my lower back. Three years ago when I had to see a spinal specialist at Emory (during the beginning of my SFN journey) she found a lot of issues with my spine but nothing she thought would be causing the SFN.

She did mention my lower back and how bad the arthritis was. She asked if I had any pain there and at that point I had not.
She commented "well you will at some point...it's pretty bad".

About a year ago I did start having pain in my lower back if I tried to wash dishes or sweep. The relief I get is not from bending forward which helps a lot of people but by bending back while standing up...that relieves the pain.

I don't have a neurologist. He didn't want to see me anymore after starting pain mgmt. (which he suggested more than one time).

I only use my PCP and my pain mgmt. dr. The pain dr is the one I asked about the massage and he said yes but 'lightly and don't let her touch your feet'.

Guess I should call him on Monday and let him know how it went and if I can continue going. I had already decided to ask her not to massage my lower back.

Thank you mrsD for looking out for all of us. Much appreciated.

Debi

I have to second Debi's statement.....Mrs. D has been and is a "blessing"....Also much appreciated.


Gerry

Echoing the appreciation of mrsD's wisdom.

Debi, I am not sure how helpful this is (I don't have PN) but I do have some osteoarthritic pain in one shoulder and sometimes get acute lower back pain.

When either flares up a massage from my physiotherapist often helps - I have never experienced side-effects like those which you have described.

Kiwi, I'd like to clarify that for Debi, her medical history has chemo use for her cancer. These drugs are known to damage the dorsal roots by attacking DNA in the host cells and this mostly happens in those ganglia.

Chemotherapy-induced peripheral neuropathy: an update on the current understanding

In patients with no chemo agent damage factor, the pain can be due to radiculopathy. This tends to be a compressive type.
The dorsal root issues are more chemical. And of course there can be both, if a chemo patient also has arthritis and spurring.

Radiculopathy Definition, Types, & Symptoms

The bottom line is one should not have to "recover" from a massage. An aggressive massage should be avoided if there is any type of pathology in the spine, or nerves.

Somewhere on both of the PN forums is an article from Science Daily explaining the dorsal root damage,and how some people cannot make the repair growth factors there to fix a toxic damage. This factor is being examined as a target for a type of stem cell therapy in the future.

The discussion here reminds me of another treatment decision that people have to make for back pain.

Heat vs ice
Too much heat will just overstimulate nerves and spasms/
Too much cold treatment may cause poor circulation at the target site.
So there is a balance that has to be done with both.

The same can be held for massage. A gentle massage may help by improving circulation to the tissue. But an aggressive massage may damage or trigger the same target.

Each person is different, so it is important to understand your own situation clearly, and see that you don't get hurt or damaged further.