ANYONE HEAR OF THESE SYMPTOMS?

[tmar4949]

Hello to all. I finally decided it was time to post a question here to try to get some help for a problem I've been having.

I've been searching for a while now for any indication as to what is going on with me, without any luck. I thought I'd put it out here in hopes someone here might have an idea.

First, some background: I'm a 69 year old grandmother, and I live in the U.S. I was diagnosed with PMR in 2016 & started Prednisone. I am down to 3.5mg daily now. I'm not without pain, but it's doable. I am also on BP medications, one of which is a diuretic, which I've been taking for years.

Then, last year, I began having problems with my feet & hands. The feet were painful and sore to walk. The bottoms turn bright red, and the tops began swelling with fluid. Sometimes the swelling is up near the toes, sometimes down the sides, and sometimes around the ankle bone. It's both feet.

Also, my fingers started feeling "sticky", and sometimes all of them will itch horribly (usually when I am trying to sleep at night). I found that ice cold water helps the itch. I was also diagnosed with Raynaud's syndrome, but my doctor didn't think it was from that. She referred me to a Rheumotologist. After a 5 month wait to get in, and over 30 labs later, I was told my bloodwork was within "normal" range (all except the ANA, which was very high). They had no answer for my feet/hand problems, except to mention it "could" be erythromelalgia. I was told to come back in four months.

I'm at the point where I can't wear any shoes or sandals because pressure on the top of the feet causes severe swelling. The feet are still very sore, and walking hurts. I want to add that, when I first wake up in the morning, the feet do not hurt (until I start walking), and they are not swollen at all. And, the diuretic I take daily doesn't help with this at all. This has been going on for a year now.

Sorry, this is so long, but I was wondering if anyone has heard of anything like this. Thank you for any input you can give me.

[Hindags]

Sorry to hear about your travails. Wow. The situation sounds incapacitating. I have nothing to tell you, except that I've seen a group on this website that is devoted to erythromelalgia. Have you asked there about symptoms and treatment?

[tmar4949 in reply to Hindags]

Thank you for your reply. I am going to check out the other groups.

[Sandy1947]

So sorry about all your difficult symptoms. I had stress fractures in both feet and continued to have pain on side and top of left foot. I tried orthotics but swelling hurt, then very cushie socks in bigger sneakers helped. But when I take my shoes off the pain is there. Dr. wants to give me a cortisone shot Wednesday. Not sure about that.

Good luck. Let me know if you find solutions.

[tmar4949 in reply to Sandy1947]

Thank you for your reply. I'm sorry you are suffering with stress fractures. I do hope the cortisone shot helps you. I plan to head over to another forum, suggested by PMRpro in hopes to finding an answer.

[PMRpro Ambassador]

I THINK - not sure - I have seen people mention similar symptoms on the lupus forum. It might be worth asking there. I know there are people there with erythromelalgia with whom you could exchange views. It could be due to peripheral neuropathy - possibly due to poor blood flow. Have your ankle and arm blood pressures been checked?

But I think someone needs to question the PMR diagnosis - because ANA is usually normal in PMR. I'm not saying it is never raised in PMR - but a high ANA is more likely to be another form of autoimmune disease.

[tmar4949 in reply to PMRpro]

Thank you, PMRpro, for the helpful suggestions. I never knew ANA is usually normal in PMR. I had several labs done that (they told me) ruled out Lupus. My arm BP has been high for years, even while taking 3 different BP medications. The doctors both said it was PMR, with "something else going on". Now, I'm wondering if it isn't PRM at all. Oh my! I will head over to the suggested forums, and definitely will research peripheral neuropathy. Thank you for responding. This has been very helpful to me.

[Lochy in reply to PMRpro]

My ANA is described as highly positive but I’ve never been told this is unusual or not the norm in PMR. Do you have any links for material I could read? (Genuine scientific ones of course, after your earlier post 😁)

Thanks

[PMRpro Ambassador in reply to Lochy]

Raised ANA is unusual in PMR - which doesn't mean it doesn't happen - and it being high, above 1:80 titre, should trigger further investigations. PMR is not the disease - it is the name given to the symptoms of an underlying disorder and there are several. If your doctor has done extensive testing to rule out the most obvious options, if you responded as expected to pred and you have been able to reduce the dose without too many problems then it could well be PMR. And for tmar where the doctors have said "something else going on" - I'd have thought it was a clear indicator that the really rather atypical symptoms are asking for investigation.

emedicine.medscape.com/arti...

rheumatology.org/I-Am-A/Pat... (no mention of PMR)

clinexprheumatol.org/articl... does say that a minority of patients with PMR have raised ANA but is a discussion of differential diagnosis of PMR.

ncbi.nlm.nih.gov/pmc/articl... I don't know how reliable this Journal is - but it is a clear review article of the use of laboratory tests in rheumatic disease.

I can't find anything that says it emphatically - just what you see here. It would be interesting to know what other tests they did at the time. And has your PMR been "typical"?

[tmar4949 in reply to PMRpro]

I have a question PMRpro: You commented that a titre of 1:80 is considered high. I just looked at my lab results, but it isn't marked like that. Mine shows like this: 1,250 1/dil (normal is 0-49 1/dil). And that is the ANA, Nucleolar Pattern. I get that it is REALLY high, but would you know the conversion to what your are using? For example: does it mean 1:250? Sorry for my confusion. Thank you for your help.

[PMRpro Ambassador in reply to tmar4949]

"INTERPRETING ANTINUCLEAR ANTIBODIES RESULTS

In the antinuclear antibody (ANA) test, antinuclear (or anti-cytoplasmic) antibodies bind to cells that have been fixed on a slide. The addition of a secondary antibody (with an attached fluorescent dye) directed against human antibodies may reveal staining of the nucleus or cytoplasm under a fluorescence microscope. Patient samples are often screened for ANA after being diluted 1:40 and 1:160 in a buffered solution. If staining is observed at both the 1:40 and 1:160 dilutions, then the laboratory continues to dilute the sample until staining can no longer be seen under the microscope. The level to which a patient's sample can be diluted and still produce recognizable staining is known as the ANA "titer." The ANA titer is a measure of the amount of ANA in the blood; the higher the titer, the more autoantibodies are present in the sample.

It is difficult to standardize the ANA test between laboratories. One approach has been to modify the test reagents such that 30 percent of normal individuals will have a positive test when their sample is tested at a dilution of 1:40. This standardization makes the ANA test very sensitive for the diagnosis of autoimmune diseases but results in many false positive results. At a dilution of 1:160, only 5 percent of normal individuals have a positive test for ANA. The 1:160 dilution increases the specificity of the ANA test for the diagnosis of autoimmune diseases."

and labtestsonline.org/tests/an...

I don't know if this helps or not. They take a sample of blood and dilute it 1 in 40 - then they dilute it more and more to see if the staining still works. So it would be 1:40, 1:80, 1:160, 1:320. 1:640, 1:1280

I would THINK that yours is the equivalent of 1:1280 - but I don't know for sure.

[tmar4949 in reply to PMRpro]

Oh, thank you for all that information! I think that, no matter how it reads, clearly it is high. Thanks to all the replies I received, I am now armed with questions for my next Rheumatologist's appointment.

[PMRpro Ambassador in reply to tmar4949]

Yes - VERY high. Which to me suggests something a lot more than "just" PMR.

BTW - there is a guy on the Lupus forum called Tiras who is unable to wear shoes because of the way his lupus manifests - you might find his writing about no shoes interesting!

healthunlocked.com/user/tiras

[tmar4949 in reply to PMRpro]

I did post a question on the Lupus forums earlier. I will check out the link you gave me now. 😄

[PMRpro Ambassador in reply to tmar4949]

Yes I noticed - give them time, they aren't like us! Obviously have a life at the weekend...

[tmar4949 in reply to PMRpro]

Thanks for the heads up! 😄

[Lochy in reply to PMRpro]

Thanks for the links. Will have a look. So far I’m 2.5 years since dx. Started on 20mg and enjoyed immediate improvement within 24 hours. Since then have had a couple of relapses and currently struggling around 10mg with sore knees! Other/previous sore shoulders etc have improved. Knees getting me down. Think I need to stick at 10 for a while.

In that sense I’m typical although as I’ve said before my rheumy doesn’t give me the impression he thinks I’m typical as I’m reducing slower than he’d like! He’s not investigating anything else at moment.

Had knee X-ray but summary from radiographer says ‘bones, joints look normal. Retropettalar sclerosis with effusion’ ! Awaiting GP official comments.

Struggling to find anything that’s typical but then I’ve come to realise not much seems to be with PMR.

[Marilyn1959]

Have just found on internet that certain drugs can cause positive ANA results. I don't know what drugs you are on but it might be worth checking these out by googling drugs that may cause positive ANA results????

[tmar4949 in reply to Marilyn1959]

I never thought of that! Thank you for the suggestion. I will do that.

[Linny3]

Good Morning

So sorry for all the difficulty. I know it is maddening.

I suffer the exact same way with feet swelling.

The only thing I might ad is, change your long term water pill. I was on one for awhile and it just wasn't helping. I changed it and my feet and legs look the most normal since all this began. Also, my blood pressure came down very nicely.

Good Luck

Lin

[tmar4949 in reply to Linny3]

Thank you Linnny3 for that suggestion. I never thought of that. I have another scheduled appointment with the specialist coming up next month, and will ask him about that. After all the blood work they did, they still couldn't come up with a proper diagnosis. The doctor said it is PMR, but that there is something else going on too. PMRpro gave me great suggestions too, and I will definitely ask the doctors about them. I'm happy to hear that just a change of medication made such a positive difference for you. If, and when, I get a proper diagnosis, I will post it. Gosh, this is stressful, but I'm so happy I decided to post here. I can't tell you how much better it feels to receive all these responses. ☺

[Linny3]

My Dr. keeps telling me something more is going on. I have Fibro. and she thinks that has kicked in big time. I keep telling her the pain is different. After 20 years of Fibro. I think I can tell the difference.

We just keep on keeping on.

Take Care

Lin

[tmar4949 in reply to Linny3]

So sorry to hear your struggle with that. I'm beginning to see that I've been a bit naive when it comes to the medical professionals. I honestly thought I would see a doctor, present my symptoms, get labs, and get a diagnosis..... just like that! I'm learning it's not that simple. And, they don't seem to understand when we say the pain is different than what we are used to. The one thing I absolutely hate is having to take any more medications, only to add medications to counter the side affects of the first. It does seem endless, doesn't it? You're correct though..... "We just keep on keeping on".

[yogabonnie]

I am so sorry you are going through this. It sounds not only painful but upsetting! I started a Lupus Diet after I gained 17 lbs with the PMR and insatiable appetite and lack of will power. . Could be voo doo cosmic woo woo but it is helping with everything for me. I feel much better and lost the weight. There is a youtube video by a doctor who says it cures many auto immune diseases.. I have "days off" but by enlarge stick to it. youtube.com/watch?v=JpCELog...(Not working as expected?) Plus you can eat fruit. And that's all I really need! Perhaps it will help. Good luck. Hope you find the answer.

[Odosmum]

I have rheumatoid arthritis and when it started, it was my hands and feet that were affected. I could hardly walk because of the pain and burning in my feet. In these early stages, even if it turns out to be something else, I advise you to keep your feet up as much as possible when you sit down, and keep off them when you can too. Lie down to rest, you don't have to sleep. If you have an oh, see if they are willing to gently scratch your hands and feet - I find it a fantastic relief. Cold water is really good too. I paddled in the sea daily (north sea, winter and summer. The relief was indescribable ). If it is RA, this is not a disease to fight or ignore. Pushing on with work or exercise which makes the symptoms worse is a very bad idea. Things will get better when you find ways of controlling pain itchiness and swelling and the right medication helps enormously, but before that, your control of symptoms is the key.

[tmar4949 in reply to Odosmum]

Thank you, Odosmum for those suggestions. I will try to keep my feet elevated as much as I can. Although RA is a disease to be reckoned with, I'm happy you got a definite diagnosis. It's the "not knowing" that is so stressful. I can't tell you how many times different doctors ordered the Rh factor labs for me, only to have them come back as "negative", so they have ruled RA out. I will keep on plugging until I get an answer. The itching of the hands is troubling (especially since it always happens at night, waking me from sleep), but a couple of nights ago, it was itching all around my stomach area. So, it seems, the itching is becoming more generalized, on again; off again. Always while I'm asleep. No rashes, I might add. I wonder if the Prednisone I'm taking is the cause. I'm beginning to feel like my body isn't my body anymore! I will come back to post how my next appointment goes. Hopefully, there will be some answers.

[PMRpro Ambassador in reply to tmar4949]

Ignorance - there is also sero-negative RA.

My itching was due to eating wheat - an allergy to somehting in the structure of the wheat starch (not gluten). But there can be other things.

[Odosmum]

I have to tell you my RA is a clinical diagnosis because I was and still am serum negative. Apparently there are some of us who never become positive. It is rare but not that unusual. I suggest talking about it with your specialist. I have had this for 25 years now and the disease has continued exactly as it would for serum positive. Generalised itching could be liver-related , so there might be a pred link there. Also red hands and feet i have been told, have some link with liver issues.

[tmar4949 in reply to Odosmum]

OH!! That is good to know. I didn't realize you could still have RA with a serum negative. I definitely have some new questions now to ask when I go to my next appointment. Thank you for that information.

[Odosmum]

Forgot to say good luck with your next appointment.