Symptoms -  PPS symptoms - pins & needles (950 views) Notify me whenever anyone posts in this discussion.Subscribe
From: janewheels7/22/12 6:19 AM 
To: All  (1 of 27) 

Hello... Jane here.

How is everyone on this wonderful day.. well, the sun is out for the first time in a long time here in the UK... and I love it.

I would love to hear from anyone who wants to write to me.

We must keep this forum going, it is important we all have somewhere to go to ask questions re PPS.

I am at the moment still suffering badly from what I can only describe as pins and needles in my lower legs (mostly), sometimes my whole legs. It is very uncomfortable indeed. I have been put on amytryptyline which did help a little but as I am typing this to you my feet have pins and needles in them. Hate it.

I wondered if anyone else was suffering the same sort of symptoms as I am. If so, please do tell me what you are doing about it as my doctor really does not understand.

Thanks... have a blessed day.


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From: ChaunceydPew7/22/12 10:48 AM 
To: janewheels  (2 of 27) 
 1490.2 in reply to 1490.1 

Jane, again what you describe is commonly a low calcium or low-calcium absorption symptom or an thyroid problem - it is described well in the "Neuro" information on thyroid conditions that any physician has access to if they will just look, and read! Most do not go that far, sadly, and hypothyroid and/or Hashimoto's is often overlooked until a patient has a more serious issue that takes them to the ER. I have written on this above so I hope that it helps you.

A common complaint of those the parathyroid disease is that they feel like they are being bitten by fleas on their legs. I just talked to a woman who phoned me from Houston with just that issue - "How do I kill fleas safely, they're everywhere I go and bit only me!" Parathyroid disease is very overlooked by the medical profession but it is not a nice disease - creates long-term suffering before it is diagnosed; often only during thyroid surgery itself! Drink milk! Eat foods that have a high calcium level.

One comment about thyroid disease and Polio itself. Hashimoto's disease (chronic thyroiditis - an auto-immune disease) can occur when someone has a very high fever or serious infection. The body goes into "overtime" to protect us, and if illness, high fever destroys tissue (such as the thyroid gland) that tissue/cells enter the blood stream and are responded to as a foreign protein so the body builds up antibodies against those cells! Hence, one may end up with antibodies against their own thyroid (or other differentiated cells) leaving them with an auto-immune condition. Dr. Hashimoto discovered this, of course. As one ages, thyroiditis (with the gland in or not!) is sometimes a challenge and it takes an excellent physician and cooperative patient to address the situation.

A note on Polio survivors and response to drugs - we often respond to condtions and drugs in a shorter and/or more intense response time. Therefore, on this topic of thyroid supplementation, we often notice and feel the results of a new thryoid supplement with a few days, not weeks as most endocrinologists' rely on by making our return appointments many weeks after blood tests and prescription changes. A wise doctor who knows our response to drugs is an incredible asset. Shop until you find one and fight for your rights!


From: Sally (SARABOWLDEN) DelphiPlus Member Icon Posted by host7/22/12 2:58 PM 
To: ChaunceydPew  (3 of 27) 
 1490.3 in reply to 1490.2 

Thank you for this info! My mother also has this and is diabetic. She takes a Thyroid supplement and has to limit her Calcium intake because of bladder problems. I'm going to print out her info to give to her PCP and Rheumatologist--perhaps a bit more exploration is needed. She is on Noritryptaline, which helps, but right now she's on a new antibiotic for another bladder infection that has increased the problem a great deal--she can't remember the name--but she does remember it's listed as a side effect of the drug.



From: ChaunceydPew7/23/12 12:41 AM 
To: Sally (SARABOWLDEN) DelphiPlus Member Icon  (4 of 27) 
 1490.4 in reply to 1490.3 

Sally, just a tip. Cumin, or cominos seeds are a great way to counteract bladder infections and bladder spasms. It is best to just buy the seeds and they are on the Import or Mexican food aisle is all grocery stores in the USA, and come in a small package. Just put them into a covered glass jar and add a pinch of seeds to about 2 C. of boiling water for a tea. Honey, Agave Nectar, or other sweetener can be used, or Stevia, or Splenda, or sugar if necessary. This is a great help. Worth the try.

Many of our people have found that urologists "always find something wrong" and keep on medicating and/or treating, so it is wise to get a 2nd. and 3rd opinion instead of taking a lot of RXs.

Good luck, and be well.

Just Me


From: janewheels6/10/13 5:54 PM 
To: ChaunceydPew unread  (5 of 27) 
 1490.5 in reply to 1490.2 


Thank you for that lengthy response. I am sorry I have not been into the forum earlier to reply to it.

I am waiting to see a neurologist at the moment to see if he can figure out why I have pins and needles in my legs. I have seen an Orthopaedic surgeon (which scared the life out of me, anything with surgeon on the end gets me all nervous), the reason is I have far too many operations in my life and do not want anymore. Anyway, as I say I have been to see this guy, who was very nice, showed me the MRI scan and X rays that were taken but he said that there was nothing he could do for me which is why he has referred me to a neurologist, now personally I cannot see him doing anything either. Time will tell. I guess.

I am doing some research on the net regarding this issue but so far I have drawn a blank but I will keep going, somewhere must mention pins and needles in PPS.

I feel that my body is falling apart on me, I have now been diagnosed with Osteo Arthritis which causes me a lot of pain and is making life almost intolerable. Got to the stage I can hardly dress myself. I have been given 2 different prescriptions for anti inflammatory medication by my General Practitioner both have upset my IBS, so much so that I cannot continue with them, which is a real shame as they were working and the pain was going, now I have stopped it has returned more than ever. I am now afraid to try yet another anti inflammatory in case I get the same after effects but I do know that something has to be done otherwise my life as I know it will cease because of the pain I am in.

People that know me know I do not tend to moan and groan and I can take pain but this is ridiculous, I cannot even hold a cup of tea without pain in my left thumb and to peel potatoes these days is a no go area. I live alone and have to be independent and the pain is right now stopping me from being sow, even typing is becoming a problem.

I have had to stop playing my beloved flute because of the pain, this was my release from the world and also my only social evening out, again no more as it hurts too much to even hold the flute, let alone play it.

I am sorry for all the moans and groans I have done in this posting but I just had to tell some people that know what I am talking about and going through.

Thank you for reading.



From: janewheels6/10/13 5:58 PM 
To: ChaunceydPew unread  (6 of 27) 
 1490.6 in reply to 1490.2 

Hi again

Just thought I would tell you that I have just re-read your post and it struck me like a hammer to my head.

I am on calcium tablets and thyroid tablets, could these be what is causing the pins and needles or have I got it the wrong way round.



From: Owen (Cymbyz) DelphiPlus Member Icon6/10/13 9:48 PM 
To: janewheels  (7 of 27) 
 1490.7 in reply to 1490.6 
I associate "pins & needles" with (diabetic) neuropathy at a stage before the (sensory) nerves go numb. Dunno if neuropathy may be your problem, but the extreme wear & tear of PPS could, conceivably, produce such symptoms.

From: janewheels6/11/13 4:21 AM 
To: Owen (Cymbyz) DelphiPlus Member Icon  (8 of 27) 
 1490.8 in reply to 1490.7 

Thank you, I am thinking along the same lines too, just need to get the doctors to agree with me now. LOL... not an easy task I can tell you.



From: Sally (SARABOWLDEN) DelphiPlus Member Icon Posted by host6/11/13 5:06 AM 
To: janewheels  (9 of 27) 
 1490.9 in reply to 1490.8 

Jane, what you are experiencing is very common among PPS folk and anyone else who've had their nerve frizzled by disease or trauma. I was on Nortriptyline (Pamelor) for many years which turned the symptoms off like a light. Recently, however, an effective dose for me has gone up to 60 mgs at night and I'm not sleeping well--not that I was a great sleeper before, but it got worse. After some research my doc changed me over to Amitriptyline (Elavil) which seems to be working. Both drugs are tricyclic antidepressants. I also took Neurontin for 8 years, but I started jerking and I had to stop.

I'm diabetic, so I also have the numbness that goes with polyneuropathy. Interesting combination, my skin feels little to nothing, but I still have pain in my feet and legs.



From: janewheels6/11/13 5:53 AM 
To: Sally (SARABOWLDEN) DelphiPlus Member Icon  (10 of 27) 
 1490.10 in reply to 1490.9 


I thought it was something to do with PPS ages ago, of course, it makes sense that if the nerves have been as you say frizzled something will happen sooner or later.

I am on Amitryptyline too, 3 tablets per night which work fine during the day but as soon as I get in bed and my legs are elevated they feel so heavy and as if they are filling up with "lagging" or "cavity wall insulation", sounds daft, I know but it is the only way I can explain it, then when I move to lay down to go to sleep the pain starts. It is driving me crazy.. I am not a very good sleeper either but mine is down to a bladder problem - it is too small. LOL....

I have diabetes in the family, my dad, bless his heart had it so I am monitored regularly just in case, right now I am "borderline" so I have been told.

Of course I also have epilepsy and take drugs for that too, so whether or not something is not agreeing with something else, I do not know.

I am also taking Circumin which is a herbal based medication for my arthritis, I have only just started ingesting this and I have been told it takes time. I listened to a book last night called "Living with Post Polio Painlessly", very interesting indeed, she talked about her own experiences and also how she has eradicated the pain using meditation and Craniosacral therapy (never heard of this before) which is all very well if you can afford to have the sessions, I live on a budget of £27.00 per week only which means I can only buy food for me and the 2 cats. Nothing more.

Well, I have gone on long enough now, sorry.

I didn't realise it but I have missed talking to someone who knows what I am on about, so thank you for this forum.



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