hi phoggie! so glad to 'see' you here, but so sorry you are in so much pain. you really need to get into a neurologist asap. I've been where just 1 leg (foot etc) slightly touching the other caused excruciating pain (just a yr ago). i ended up in the hospital for 5 days. but I never did get a reason why it happened.

Greetings, phoggie,

I'm sorry that I have no experience to enable me to offer some real help, but offer my sympathy in these your hours of heavy hurt.

ole joyful

Wow. Something is sure misfiring. Hopefully you find an answer soon and can find some comfort and relief. I will be thinking of you. Gentle hugs and take care

My 35 year old son has Raynauds and has had for years. He is regularly tested for the onset of RA as they can be connected. So far so good. His rheumatologist has suggested avoiding refined carbs and getting lots of exercise (which he does) and keeping a healthy body weight (which he does). He does a lot of winter backcountry skiing and hiking and that's when/where he has to be particularly careful. For some reason he had a spring flareup and he went to his rheumatologist who suggested that this flareup could have been stress related. He hadn't experienced that yet but he was going through some stress but it was happy stress. (buying a house, getting married....) but still.

Thanks desertsteph...my appointment is not until November 4th! If it was just my foot I would think it was from my diabetes. I have had Shingles and that is the same feeling pain only under the skin of the entire area from buttocks down on both sides into my heels.

I am not current but I would wonder is some of the medications you are taking may be causing problems. Other than the Hashimotos and RA the other two are often diagnosed by the symptoms rather than by any test other than blood flow for the fingers turning white. Medications can reduce the blood flow. They may also not be absorbed to provide an equal amount at all times in your system. A pharmacist picked up a problem with my hands and suggested I talk to my doctor about something I was taking. Dosage reduced and taken twice a day rather than once the problem went away.

If you have multiple doctors it is important to ask all of them if they know of any interactions.

Thanks blfenton but I think that was a lot of stress, even if it was happy...best wishes to your son!

I dont have your symptoms but i do have plenty of other physical problems that are painful. I just want to commiserate about getting in to see a doctor. I called my regular spine doctor last June and could not get an appointment until October 5th. I was able to find another doctor to see me sooner, although he is new and i know almost nothing about him. Any port in a storm!

Is it possible for you to see a pain management doctor sooner? I feel so bad for you. There are simply not enough doctors. I hope you get some help sooner than November.

Sounds like a horrible set of issues.

I have had Raynaud’s for years, as did my father. But I just wear gloves and otherwise ignore it. Raynaud’s is very common and is only rarely an autoimmune disease, so I wonder whether maifleur’s theory may be right.

Detired...the other neurologist I was referred to couldn’t see me until next March! There is a shortage of specialists for sure...or at least anyone good! I do have appointment next week which I had previously scheduled with a new pain management doctor for my back...my old one retired :(

Floral....Raynaud’s is the least of my problems...fingers hurt, turn white and cold, then black, but doesn’t last long. I was told all autoimmune diseases were inherited. I know my Grandmother and Aunt had some of them also.

No advice, but plenty of sympathy. My MIL has been suffering from neuralgia from a bout with shingles for over a year, so I've witnessed how miserable such things can be.

I've never had much issue seeing specialists, so I just checked my medical app to see how soon I could get in with a neurologist. Dec 5 was the nearest option, and that's in a large network. That specialty must be in demand.

Good luck to you in getting answers and relief!

I have had Raynaud's for years and do nothing for it. It can be irritating and sometimes painful but I take no meds for it. Must be hereditary because I passed it on to both kids. Last night for the first time all summer since May, the temps were in the 50s and I noticed my toes all turned white but other than that no other symptoms. Good luck with finding

the answer you need.

Raynaud's can be serious as you can lose fingers and toes. It can be progressive getting worse over the years, or not. My BIL's mother died.

Autoimmune diseases are the pits because they are not understood at all. We tend to think of the part affected like your Thyroid lungs or nerves but that is the result. Some part of your immune system is going haywire and it attacks some part or parts of your body depending on what is going into overdrive. It is very difficult to treat. Stress is known to be a trigger. I have a number of autoimmune issues.

Stress can indeed be a trigger. I have had mild psoriasis for years, but when I went to the salon one day, my stylist barely started when she stopped, looked at me an asked "okay, what's going on in your life?" I told her my father had recently passed away and my mother was staying in memory care. My stylist could tell by the flare-up.

It doesn't seem reasonable that you should have to wait so long to see a neurologist, it's not like that's such an in-demand, under-filled specialty. Do you live in a rural area? Are you able to get to a larger medical center/medical school to be seen sooner? Good luck.

I was diagnosed with Raynaud's when I was in my twenties. My doctor recommended I move to a warmer climate. It has been almost non-existent since then. While going through menopause, I noticed symptoms of Sjogrens, but was never diagnosed. I use drops for dry eyes. Could it be menopause related for you? The pain you are experiencing from your backside down to your feet is a quandary . Sounds like it's nerve related. I wonder if it is a side effective of your medications?

Hopefully, you receive answers and can be relieved of your pain.

Yes, I have Sjogrens with salivary stones and Scleroderma which includes Raynauds. I also have GI problems that go along with autoimmune diseases. I belong to Facebook groups about these diseases. I have learned so much from group sharing.

(((Phoggie)))

So sorry you are going through this. I do have several of the same conditions. RA, Sjogrens, neuropathy, long term shingles pain in my left hip thigh area, thyroid. Auto immune diseases come in clusters unfortunately. Currently I am experiencing pain and leg twitching with just the air touching them, with pj's on. For me some of it is due to CMT an incurable condition which I have had for years but it is very progressive. It is why I am mostly in a wheelchair or power chair. So many things get worse as we age!

Good luck with your situation. Having a good understanding neurologist and rheumatologist is essential.

Honestly I think it can be useful to turn the issue around. When your immune system is acting up it can attack all sorts of disparate seeming parts of your body. It seems to be a lot of diseases but the diseased parts are just the targets of the actual disease. When a person with Graves disease get bulgy eyes-a classic sympthom- that is actually because the immune system is attacking the muscles around the eyes at the same time it is attacking the thyroid gland. It could be attacking your heart muscle or all sorts of other parts at the same time.

Could you call the neurologist and ask to be notified if there is a cancellation. Sounds like you are suffering so much. Tell them that too. Are you committed to seeing this neurologist where you have the appointment, or could you try others for a sooner appointment? I'm so sorry you are miserable. You need help!

Raven I am so sorry that you too are suffering with these illnesses. My heart goes out to all those who suffer with daily unrelenting pain,

Hugs to all suffering with health issues. I hope solutions are found for you.

I have no advice but I'm sorry you are going through so much

Most Drs dont seem to kerp a cancellation list Call every day and ask if anything sooner than your appt is available. Its worked for me Sometimes even a couple of days later

Jkayd...I also belong to a Sjogrens forum..Wonder if it is the same one! It does have a great deal of good information...and someone usually has an answer. May you find solutions to your problems.

Elmer...Evidentually you haven’t tried to get into a Neurologist who knows anything about autoimmune diseases...I am on a cancellation list at KU Medical Center and Mayo Clinic...as well as appointments months away with both places.

Raven...sorry you are going through this also! I hope you find relief. My pain actually feels like Shingles without the breakout! I would like to know more about your long-term pain...I had Shingles a few years ago. Yesterday, Dr changed meds from Gabapentin to Lyrica...hope it helps!

I hope you can been seen by a proper doc soon. I'm not sure how the specialty matters. If I faced the same circumstances you describe, I myself wouldn't be happy having to wait months for an appointment and I'd be sure to explore all possible alternatives to be seen sooner. Such a long wait doesn't seem reasonable.

Elmer - Getting in to see Neurologist IS very hard. They are highly in demand and apparently there are not nearly enough of them for today's aging population.

I see mine every 6 months for my RA checkup and when I leave I make my next appointment and even 6 months in advance it is often times hard for the assistant to find an open slot. And yes, this is in a major metropolitan area of ~2M (The same area phoggie is trying to schedule an appointment).

eta: they do usually reserve some appointments for new patients but it doesn't seem to be enough. I had to wait a couple months for my first appointment and by that time the steroid shot my PCP had given me for relief had worn off.

LoneJack, you're not reporting another instance, you're reporting the same issue in the same place. I've not heard of this problem in my area so maybe it's the case that your region is one among a few exceptions to what others usually experience, or my area is (in the opposite direction), or that it can vary significantly from place to place. I think the first is most likely.

I haven't heard of neurology being a practice area with a shortage of docs. If anything, I've heard the opposite, that it's one of the so-called "work-life balance"-friendly specialties popular with the new generation of millennial physicians and oversubscribed for as a result. .The joke told about dermatologists, another of the specialties that are popular practice areas because it's not demanding of off hour, on call attention, is that dermatologists don't get calls in the middle of the night from patients saying "Doc, I need to see you right away, my arm is itchy".

I have to agree with Jack. My doctor recommended that I see a neurologist and she also cautioned that it would be difficult to get an appointment.

This is a huge metropolitan area being a 'burb of DC.

Have you considered seeing a rheumatologist? They treat autoimmune diseases.

My bad, replace Neurologist with Rheumatologist in my previous post. Not sure what I was thinking yesterday.

My DW has MS and sees a Neurologist regularly but her appointments do have to be scheduled pretty far in advance as a rule. She also has Trigeminal Neuralgia and oddly the several times she's required a Neurosurgeon for a Radiofrequency ablation procedure or Gamma knife surgery she hasn't had to wait long.

Phoggie, that sounds horrible what you're going through and you have my sympathies. I have 2 autoimmune disorders (that I know of). I was going to suggest a rheumatologist too if it's autoimmune related...a physiatrist for pain management....and an orthopedist or neurologist if it's back/nerve related. I hope you can get help and solid answers and treatments soon! Stress reduction can help, but then again, I have not been able to place many of the triggers ...

In my area, I wanted to see a dermatologist...skin scan they're booked out at least 6 months. To look at a spot I *only* had to wait 6 weeks. I'm finding this true for almost every medical area except to see my PCP....orthopedic surgeons, neurosurgeons, physiatrists, even the PT guy I've been going to...all booked out well in advance. DH needs to see his kidney dr. and had to wait 2 months to get in. And yes I'm in a well populated area close to several teaching hospitals.

When I had shingles three years ago my PCP said a neurologist (the most highly--regarded in the area) could squeeze me in on Wednesday, and I should take the appointment because he was retiring on Thursday. These days I'm told the neurologist most people prefer is extremely hard to see.

I've had Raynaud's for about 40 years. Some years have been worse than others--I've lost fingernails and had open sores--but all are painful. The fingers have so many nerves, and most of us have no idea how often we bump our fingers into things in the normal course of life. With Raynaud's this can be beyond painful. If Alexa were a real person she'd wonder why I cry out so often during the day in winter.

I wouldn't be surprised if I have Sjogren's or some variation thereof. I have the dry eyes, skin, mouth, and now that you mention it, my outer ears have recently become flaky. I haven't paid much attention to it because I've been distracted by a breathing problem I've had all summer (waiting for a pulmonary test at the end of the month) and my latest Lyme infection (still very much going on).

Over the years I've been diagnosed with Lupus and undiagosed with Lupus. I've had fibromyalgia to varying degrees for about 30 years. My daughter has Celiac.

Your soft-fiber neuropathy sounds dreadful. You have my sympathy for all of it.

I have the same neuropathy. I try not to take drugs as I have damaged kidneys. I did find out that, if you take vitamin V12 twice a day, it calms the pain a bit. I go to Life Extension to get my supplements as they are In the U.S. and have scientists on board. Magnesium is also included in my pills. Give it a try. My pain went from a 10 to about a 2 when I take both of those.

I'm so sorry to read that so many here have such painful medical problems. Sympathy is all I can offer.

Knowing that there are too many old people and too few MDs has to be part of the problem. Adding Nurse Practitioners has helped to some degree. Another problem is that as we age, we lose our natural immunity; perhaps that contributes to the auto-immune disorders?

My RN MIL used to say, with well-earned cynicism, that Dermatology is one of the least stressful and most lucrative specialties. "Your patients aren't in mortal danger, and they're never cured." A dermatologist DH saw years ago said that his is one of the least scientific fields of medicine, with virtually the same medication prescribed for all ills. He cited preservatives as a major problem, along with decreased immunity to them. (That was prior to the public alert about parabens.)

Yayagal...did you mean B12? i do take that, as well as Magnesium supplements...but haven’t seen any relief.

Lonejack...Dr.Jabari, neurologist at KU Med shares same office area as Dr. ”N”, Rheumatologist who specializes in Sjogren’s...so I am hoping if I need to see him, I can get into him sooner by referral from Jabari.

Alisande...your description sounds just like the first of what my Sjorgren’s was like...but hope it isn’t.

Elmer...no, I am not happy about the wait either, but a patient is at the mercy of a physican’s schedule. Just because you haven’t ”seen” a shortage, does doesn’t mean it does not exist!

chisue...Stress is one thing that is thought to bring on autoimmune diseases. I have heard of 8-10 year olds having them....just this morning, I was told that a close friend’s 18 year old daughter was diagnoised with Sjogren’s.

phoggie, so sorry for your extensive pain, and we can shake hands, sincel I have fibromyalgia since childhood, but by now my bodywide pain (including Complex Regional Pain Syndrome) is excruciating. I also have painful scoliosis and spinal O.A., and probable foot/leg neuropathy. I don't know which is the greater cause of leg pain, the latter, or my severe varicose veins. Another foot-pain condition is my Tailors bunions.

This doesn't mean I don't know what you're feeling, though, because at times I feel a pins/needles sensation shooting to my feet.

But even more to the point, whereas the above poster experienced Shingles, I myself have suffered a terrible case of poison-ivy a few years ago, such that for several days I was forced to wear the lightest-weight rag, which i found in my rag bin.. I also took Borax baths, and swabbed all over with Naphtha Soap. I also kept smearing on pure calamine lotion (with no additives) all over my body. Also smeared Aveeno Anti-Itch lotion over my arms and hands. Those combined therapies seemed to help, and certainly didn't harm. Also note it's a FALLACY that you can't get poison-ivy on your palms, because my case was so bad, (spread by a terrible poison-ivy detergent which had been given good reviews online), that the poison even reached BETWEEN my fingers. And THAT was painful.!.!.!.!.!

In fact, the skin between my fingers was so sensitive, that I was scared to put anything but Naphtha soap and Wound-Honey there (not even calamine).

My [amateur] suggestions to you:

• Did you download f.lux, and were your screens always easily dimmable? Cuz I personally find that bright computer screens plus too much exposure to EMFs may worsen any such conditions as yours and mine and many other types. Just saying this, in order to alert you, because many people used to contract electrosensitivity and CVS (computer vision syndrome) during the era that high-tech meant High-EMF clunkers and even Bright LED screens which couldn't easily be dimmed. This is not widely known, because the high-tech industries criminally hushed it up. Just ask Swedish & Canadian authors such as Nordstrom etc.etc, who may not even be alive anymore.
• Also, acidic foods such as citrus (and acid-reactive foods such as chicken and proteins) should be acknowledged as potential triggers.
• BTW, note that for me, sweet-relish mixed into chicken-salad seems to neutralize the acid after-effect of the chicken. Alot has to do with figuring out which food-COMBO'S work best for you.
• As other possible mitigators, ingesting baking-soda-mixed-in-water might help alkalize your blood, and act as a temporary calmer, as well as eating yogurt, or drinking milk, or almond-milk, or coconut milk...
• Perhaps pure calamine-lotion or aveeno-anti-itch can help, though i'm not sure its indicated for small-fiber neuropathy as it is for poison ivy. Furthermore i'm not sure how well such lotions are tolerated by Sjogrens patients.

^^^^ I thought the same for avoiding acidic food such as cow milk (almond milk ok), dairy products, meat. A vegetarian diet may help relieve your symptoms.

Jally, I found it interesting that you mentioned chicken's acid after-effect. When a friend was diagnosed with GERD, her doctor told her to stop eating tomatoes. I told her I was more likely to get an acid reaction from chicken soup.

Yogurt is an acidic food, though, and I'm surprised to see it mentioned as having alkalizing properties.

All dairy products are acidic such as cheese, yogurt, milk, cream…

And all animal meat products are acidic too. Also avoid highly processed food with preservatives. You don’t want to intake these undesirable food to inflame your nerves.

Phoggie, I’m sorry you are feeling so much pain and discomfort.

Did you mean ”Small” Fiber Neuropathy? https://www.ncbi.nlm.nih.gov/books/NBK582147/

(Not “soft“ fiber neuropathy)? Did your PCP diagnose you with that?

And, if I may ask, who diagnosed you with Sjogren’s Syndrome and with RA? How did you get diagnosed with Hashimoto’s thyroiditis? Did s/he test for the antibodies usually found positive in these diseases? And an ANA (anti-nuclear antibody)? Have you been seen by a rheumatologist? Why wait until the neurologist appointment? Have your PCP refer you to one now, especially if s/he has diagnosed you with RA and Sjogren’s Syndrome and some form of autoimmuniy?

IMO, a rhematologist would make the most sense and be your best bet for understanding what is going on with you, are the conditions related, and how can you find some relief and reassurance soon.

Some autoimmune illnesses can be difficult to diagnose. Some overlap and can cause similar symptoms.

While you’re waiting to be seen by a rheumatologist, I would caution against having pain and anxiety (would wouldn’t be anxious) have you go far afield (IMO) looking for answers in dietary and metabolic complexities.

I have had horrible experiences with excruciatingly dry eyes and some (many) of the other painful situations you speak of.

I belive I wrote a rather comprehensive to someone else (you?) here a few months ago.

I hope you feel more comfortable soon.

Petalique...could have been small instead of soft...by the time I was done being told all that was wrong and the arsenal of meds he was prescribing, I was so frusterated! All of diseases were found through blood work.i have been referred by PCP to Neurologist...but the wait is long...but he is in the same complex as a Rheumatologist who specializes in Sjorgren’s....and we are fortunate to have someone relatively local to my area.

i am pretty well gluten and sugar free...but can’t tell a huge difference.

I’m so sorry you are feeling so awful. That nerve pain sounds miserable. Does anything make it better?