Author Topic: feet and legs pain  (Read 606 times)

bluegardenia

  • Hero Member
  • *****
  • Posts: 527
feet and legs pain
« on: August 04, 2017, 03:28:05 PM »
hi everybody.
 since i was diagnosed five years ago i never had any pain . all started two months ago . during all winter  i used the same nike shoes and could walk  a lot normally. then a very warm spring arrived and of course i changed the shoes to  "lighter" ones. i started having pain under my feet and could no more walk without shoes in my house as i always did  because i felt the ground so " hard".( trying to find the right words, sorry english is not my language.) i did not want to give importance to that and went on  with the same new shoes but had to buy another. pain was less but it is like it was always ready to reappear and then one day  pain took also my legs and it was so bad that i went to the neurologist who made some moves  and said i  have more sensitivity in my nerves due to sjs. she gave me magnesium and vit b but i cannot take magnesium because it gives me diarrhea and vit b in these days gives me burning stomach. this pain comes up from the feet and sometimes arrives to my bladder so i feel like if i had cystitis. the more i walk the  more i have pain so as a dfefence i do not move much anymore and they said that its wrong, i must move.
 i have a lot of friends with e the same age who have the same problem with feet so i wonder if this is realated to sjogrens or its the normal  for most of people getting older. neurologist asked some blood exams but they are like old ones , no change, my ra is the same .i made rx but  do not have arthritis. any suggestion? i think my nerves are inflamed and i feel more pain than  healthy people bec i have sjs.
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Joe S.

  • Hero Member
  • *****
  • Posts: 7423
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: feet and legs pain
« Reply #1 on: August 04, 2017, 06:59:18 PM »
Blue, you may test for mineral deficiency. Try soaking your feet in a bath with 1 cup Epson Salt and a couple of drops of lavender. The bath may help you feel better also.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

bluegardenia

  • Hero Member
  • *****
  • Posts: 527
Re: feet and legs pain
« Reply #2 on: August 05, 2017, 03:38:10 PM »
thanks joe, ill try. today was some better, i changed shoes again and i avoided waking bare foot. lets see if this night ill be able to sleep
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

bluegardenia

  • Hero Member
  • *****
  • Posts: 527
Re: feet and legs pain
« Reply #3 on: August 06, 2017, 04:07:52 PM »
not so much better, i feel if i had some "wind" blowing from my ankles to the knees
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

cccourt1942

  • Hero Member
  • *****
  • Posts: 1449
  • Suffered from numerous symptoms for about 25 years
Re: feet and legs pain
« Reply #4 on: August 07, 2017, 09:04:09 AM »
Hi Blue:  sorry you are out there without any clear idea what's going on.  I do NOT have these issues...but your vague description (or mixed description) reminds me of people who are beginning to have neuropathic symptoms.  I've noticed different people report sensations in several ways.  If you have a neurologist, ask him/her.  I have ZERO idea this is it:  I am just sayin' it's something you might rule out.

Your description of "wind blowing" reminds me of how someone might perceive the light prickly sensation prior to full blown neuropathy. 

Good luck...and hope you will learn soon what is aggravating you.

c3
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 12755
Re: feet and legs pain
« Reply #5 on: August 07, 2017, 06:46:17 PM »
I have periodic neuropathy with symptoms that bother and one thing is the pins and needles sensation, then the sharp stabbing pains mostly in my legs and then the feeling that a breeze is blowing on my feet or lower legs.

I went through several years where I would have to wrap a blanket around my legs from my knees down when I sat at the computer. I told my hubby that I thought there was a breeze coming up from the basement. He checked it out and then was no breeze. I have Sjogrens so I assume that this is part of Sjogrens and my neurologist agrees.

I have been lucky that I don't need to take anything for it because it comes and goes throughout the days. Sometimes going to sleep is rough but wearing socks helps a whole lot. You need to let your regular doctor know about this and see what he says. I always is good to see a neurologist as people with Sjogrens suffer from so many neurological issues and they can order medications that help. Don't suffer with it when there is help to be had. Good luck. Irish

bluegardenia

  • Hero Member
  • *****
  • Posts: 527
Re: feet and legs pain
« Reply #6 on: August 08, 2017, 09:02:43 AM »
thanks ccc and irish.
yes i think its connected to sjogren. i already went to a neuro when the big pain started and she wasnt prooccupied after visiting me. she asked for blood tests that were ok and  suggested me vit b and magnesium . i cannot take them now bec i have gastritis. anyway it all started from an iflamation of my feet when i changed shoes. i became more sensitive to everything so probably my nerves make me feel more pain than a normal person. now italy is in holiday, ill have to wait the end of august to see again my neuro. im taking some medicine and i changed shoes and i noticed that if a take a little benzodiazepine it s better. another thing, wheni was 50, years ago... i had noticed that most women of sixty do not wear  normal shoes anymore...i noticed that in united states but now its coming also in europe. an epidemy of foot- itis or normal passing of years? i do not remember my mother wearing nike!!! she wore  heels till 84
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Sooki

  • Hero Member
  • *****
  • Posts: 850
Re: feet and legs pain
« Reply #7 on: August 08, 2017, 12:22:13 PM »
I wonder if compression socks might help.  I get what I call"white noise" in my feet and ankles intermittently.  When I bend my ankles a lot (walking uphill, hiking, etc.) they get pretty slow and stop lifting until I stop for a few seconds.  Compression socks (cheapish knee-high from the local pharmacy - Futuro I think) seem to help for awhile.  I wonder if it's blood pooling in my lower legs; the rheumy said it could be the valves in the blood vessels getting weaker.
67 yo, Sjogren's, Lupus, Hashimoto's, Sleep Apnea, fatigue, MGUS, peripheral neuropathy, ocular rosacea
Plaquenil, CellCept, Levoxyl, Xiidra, D3, biotin, B12, ALA, DHEA, Ubiquinol, CPAP, HydroEye, Paleo AIP, fish oil

bluegardenia

  • Hero Member
  • *****
  • Posts: 527
Re: feet and legs pain
« Reply #8 on: August 08, 2017, 02:47:25 PM »
i made ultrasound and blood vessels work
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Carolina

  • Hero Member
  • *****
  • Posts: 5281
  • —if it ain't one thing, it's another." Roseanne R.
Re: feet and legs pain
« Reply #9 on: August 08, 2017, 03:44:34 PM »
Dear BlueGardenia,

Of course I don't KNOW what you are experiencing and I can't diagnose you because I'm not a doctor.

But I rather suspect perhaps you are experiencing the beginning of some neuropathic symptoms, which can feel like so many different things since the nerves are damaged and are sending unusual signals to your brain.

Some times pain, sometimes tingling and burning, sometimes a feeling like an insect is walking on your skin, sometimes numbness.....so many possibilities, including the feeling that wind is blowing on your skin or that cold water is running on your skin.

I wish you the best in your search for answers.

The treatment for the pain and unpleasant sensations is often Gabapentin or Lyrica, which  interrupts the sensation of pain in your brain.

I take 3600 mg of Gabapentin daily to stop the pain and sensation that my skin is on fire.

Blessings to you,

Elaine

Female-75-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-IVIG-Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-Copper-Amitriptyline-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

MAT51

  • Hero Member
  • *****
  • Posts: 630
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: feet and legs pain
« Reply #10 on: August 09, 2017, 11:52:06 AM »
Interestingly - an acupuncturist I saw briefly for my small fibre neuropathy a few years ago  - told me that in China this is known as "windy liver". She went away and did some research for me and came back the following session with "Sjögren's?" written on a slip of paper. Apparently it's a much dreaded form of pain amongst the Chinese because acupuncture usually does little for it  - well you can see why it might not I think?

So the cold "white noise" wind still blows through my legs and arms a lot - but the burning pain has eased off for now and been replaced by new types of pain in muscles and joints. My neurologist and rheumatolgist have both been quite happy to chalk it all up to small fibre neuropathy, Raynauds and tendinitis - all as part of my confirmed Sjögren's. I can't tolerate drugs used for nerve pain so I just try to breathe through it, do some Pilates exercises, make myself walk my dogs and rest a lot when it's flaring. This and fatigue plus motility issues are the worst part of Sjögren's for me - although the wretched Sicca isn't great either! 

« Last Edit: August 09, 2017, 11:58:49 AM by MAT51 »
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

bluegardenia

  • Hero Member
  • *****
  • Posts: 527
Re: feet and legs pain
« Reply #11 on: August 09, 2017, 03:20:51 PM »
thanks everybody
for sure its some kind of neuropathy. i changed again my shoes and its better,they are not "normal"but that sensation is gone. massaging my feet i noticed that under my feet i have a kind of hard little cushion that goes away with massage. this morning i tried the old shoes , the ones that started the pain and after two hours it appeared again. so probably there is something that inflames the plant and my nerves react.strange because they are flat and soft. ill have to wear nike for ever...and no bare feet
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

quietdynamics

  • Hero Member
  • *****
  • Posts: 2383
Re: feet and legs pain
« Reply #12 on: August 10, 2017, 08:54:35 AM »

Regarding Feet: I had a few occasions where I could barely walk as my feet felt as though they had been dragged across for example a rough concrete sidewalk (only way I can explain it). And then the off and on color changes in the skin color of my feet.. I would think to myself hard to find nail polish to go with that skin tone.

SJS Rheum did test and I was defiecient in Vit D and B's .. so he order a protocol of Therapeutic doses.
Vit B12 5000mcg sublingual drops ( another Rheum takes and recommended the sublingual vs pills).
"Peripheral neuropathy, caused by certain chemotherapy drugs, causes numbness and tingling in the hands and feet. ... Vitamin B12 at 1000 mcg may also help with symptoms of neuropathy."
Vit D3:  SJS Rhuem treated me with a therapeutic regiment of 50,000/wk with lab monitoring.
Vitamin D Deficiency Promotes Skeletal Muscle Hypersensitivity and ...
https://www.ncbi.nlm.nih.gov › NCBI › Literature › PubMed Central (PMC)
by SE Tague - ?2011 - ?Cited by 59 - ?Related articles
Humans with vitamin D deficiency exhibit muscle pain in muscles at multiple locations. However, the .... Immunostaining of nerve fibers in footpads and muscle. (Might be of interest to you?)

Vitamin D is known to help the body absorb calcium, and it plays a role in bone health.

I also have a Dr. script for Lidocaine gel which help with break through pain.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

bluegardenia

  • Hero Member
  • *****
  • Posts: 527
Re: feet and legs pain
« Reply #13 on: August 11, 2017, 02:54:59 PM »
thanks Quietdynamics. i take weekly 25000  vit d and its levels are ok. i know about vit b but cannot take it right now bec it worsenes my gastritis. im getting used to the feet trouble, now worst moment is  when i get out from bed and put feet on the floor after feww hours of rest.im taking a medicine that i metioned  already speaking of vulvodynia and seems it works, its palmitoyletanolamide, ive seen you have it in united states
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 12755
Re: feet and legs pain
« Reply #14 on: August 11, 2017, 03:19:00 PM »
I have been on the bit d for a few years now. Started out with there 50,000 dose weekly and then cut down and finally down to 2000 a day. I have yearly bit d blood work and my blood work is finally up in normal range. It takes forever for this vitamin to build up. The bad thing is that it does't get flushed from the body so we need to have the blood work done routinely to keep track of what the number is. Eventually will have to stop taking it as it blood level can go into the toxic range. Every thing we take seems to have to be monitored in one way or another. Irish