Parsonage turner syndrome *

Posted by adriennes @adriennes, Sep 9, 2017

I was diagnosed with parsonage turner last November after 2 months of agony, while I am able to function now, I’m still experiencing severe weakness, numbness, pain, this is unusual im told, but having it as a woman is unusual also. Does anyone have any experience with this?

@lisalucier

HI, @adriennes – Thanks for the update. Will you share more about why you think the massage and cupping made things with your PTS worse and why the pilates and walking seem to be working well?

@chriso12345 – how did your next appointment and the EMG go?

@missme – are you still using the compounded cream with lidocaine, guaifenesin, ketoprofen and magnesium you mentioned some time ago? If so, is it helping you?

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I have had PTS since May 2017. I was able to return to work in August 2017, with pain meds. I began accupuncture in October 2017. As of January 2018, I have been off all pain meds and now only have mild pain in my upper arm. I highly recommend accupuncture treatment. After meds, pt, and nsaid cream with lidocaine, the most effective treatment was the accupuncture.

Liked by Jamie Olson

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@survivingpts

I have had PTS since May 2017. I was able to return to work in August 2017, with pain meds. I began accupuncture in October 2017. As of January 2018, I have been off all pain meds and now only have mild pain in my upper arm. I highly recommend accupuncture treatment. After meds, pt, and nsaid cream with lidocaine, the most effective treatment was the accupuncture.

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Hello @survivingpts! Thank you for posting. That's fabulous that you have had such a great outcome with successful acupuncture. Is there an integrative medicine facility that does your acupuncture or does your chiropractor do it? I too had treatment with acupuncture after a car accident and results were astounding.

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@chriso12345

Not sure this is the right place to post. I was just diagnosed with Parsonage Turner Syndrome. I guess the good news is that it’s only been about 5 weeks since this began. From reading other posts, I can’t imagine dealing with this for months and years without knowing. I’ve seen posts about using heat and cold, and cupping. If possible, can I get some additional information about this? What works to manage the pain? My hand is driving me crazy! It’s the median nerve that’s messed up from halfway between armpit and elbow down into hand. Most of my hand is numb (except for pinky and half of ring finger) but it’s also hypersensitive to cold. Touching metal is bad. Any suggestions on how to manage? Still trying to work but it’s tough. Thanks in advance for already posted. It’s been really helpful finding others who are dealing with this.

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@chriso12345 Welcome to the group… you're description of hand pain is my exact experience. I started having issues the beginning of April 2018. About 3 months in, I went though the horrible hyper sensitivity you describe. I found that ICE was very helpful – but I guess I didn't have sensitivity to it like you do! I would caution you about swelling… if you have swelling that starts to inhibit your ability to move the index finger (or others) through their full range of motion – i.e. can you make a tight fist? I would go see a hand doctor right away. I lost my motion in my hand and ended up going to a hand doctor. After steroid injection and several months of physical therapy I can finally fully close my fist (although there are still limitations… going back for a 2nd injection soon). Also… compression gloves were a LIFE SAVER during the hypersensitive phase. Some of the hand therapy I did was desensitivity focused. I'm still sensitive to metal – but have developed a tolerance. Don't mean to overwhelm you with info… but I also did 2 spinal injections… at first they thought my issues were neck related. The injections did help – as I was told a steroid injected anywhere will help inflammation anywhere in the body to some degree. I'm still on the gabapentin… tried to reduce my dose without success… will try every month or so to see if I can get off of it. Would hate to think about being on it long term… Keep us posted on your progress…

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@confused1955

Your story sounds way too familiar. I have it in both shoulders arms and pa5in like acid being poured on my hands. I have very little use of my hands although I can now touch my thumbs and fingers. Pointing finger is always pointing. When I was diagnosed with PTS I had been bedridden for 3 years because of pain in my spine from neck to tailbone. I am still unable to sit for more than 5 minutes. So 3600mg gabapentin, 2 x 9mg hydromorphcontin 4 x 2mg dilaudid forbreakthrough pain. We have never changed the meds because these are what the would give me. They help my back but foes nothing for my hands. It came on sudden and has been 18 months. I totally believe my issue is in my neck but I can have an MRI because in my centre chest I had a stentput in my bile duct when the removed my gallbladder. 3 years ago they did an MRI and the stent exploded now there are pieces everywhere and it's more dangerous to remove than leave them there. I feel your pain. I feel so sorry for you. It's a nasty disease. I have already wasted from 168 to 90 lbs.

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@confused1955 I had the same hand issues you mention… "the pointing finger always pointing". I was so frustrated with the doctors because they never seem to care about my hand and the fact that I couldn't use it! My quality of life was miserable! I finally went to a hand doctor on my own… he diagnosed the "pointing finger" as tendonitis due to the extended period of swelling in my hand. Steroid injection and a couple of months of hand therapy and I was able to finally make a tight fist again. Oddly… my finger still feels "puffy" and cannot make a tight fist on its own. If I work it and push is closed with my other hand I can get it there… then I exercise it through the full range of motion… it's painful… I do it 2-3 times a day and yet still 5 minutes afterward and I can't make a fist… I'm going back to hand doctor in a couple of weeks. I suspect there will be a 2nd steroid injection. He also says there is a tendon "release" procedure that can be performed that may help range of motion. I take 1500-1800mg of gaba a day… I've tried to wean back but without success. Desparately do NOT want to be on this drug long term… afraid of dosage creep… You mention you think your issue is neck related… I went for spinal injections when this first all started… the doctor who did the injections completely poo-poo'd the PTS diagnosis… said it was all my neck… so you may be right!! Will say a prayer for you… hope you find relief. JJ

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@adriennes

Hi, I haven't posted in awhile, I've had 3 neurologists, each one having treated only one person with PTS, so after 2 years , I'm still suffering numbness, nerve pain, and weakness, but, in the big picture, I am so very much better! Hang in there, heat works great. Gabapentin I can't go without, but in lower doses I always wear a glove but can't handle compression, just leather, pilates and walking a life saver, exercise with no or little body jarring. I tried massage and cupping, made it worse. I am finally getting movement in my thumb and forefinger. Time, lots of time. I still take painkillers maybe one a week cold air is not our friend, hypersensitivity is what I have now. Just knowing others have this, that I'm not crazy is huge.

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@adriennes I just had to 2nd your comment here… I'm still miserable… but compared to where I was 4-5 months ago I'm SO much better! I hope I can say the same again 6 months from now! Getting motion back in the hand is huge… and that frustration of not totally understanding WHERE the pain comes from… feeling like your crazy and it's all in your head! Poor family members do their best to understand but coming here and talking to kindred spirits is great therapy!

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@chriso12345

@lisalucier – next appointment with EMG is Tuesday, November 6th. Symptoms seem to have stabilized somewhat in the last 2 weeks. Arm pain is much better. Pinkie finger is normal. Everything else on right hand is a crazy combination of numb, painfully swollen, and hypersensitive. Started wearing a thin cotton glove wrong side out (seams hurt) to bed. Husband calls me Michael Jackson and that’s okay.

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@christo12345 Same for me… turned the compression gloves inside out… do not understand why they aren't made that way in the first place!! I was wearing my glove in the grocery store this summer… some snot hole teenage girls made fun of me! "Nice glove…". I really wanted to punch them in the face… at the time it made me really sad… I've got a little more perspective now… but STILL wish I could make them understand the hurt they caused!! Also found that wearing the glove opened the door for people to ask me what was wrong with me! Why was I holding my arm strangely and couldn't use it at all. Couldn't push the cart, couldn't lift the heavy items etc. Once you wear the glove they feel open to asking questions… which was fine with me… the problem was I didn't have anything really to tell them. I'd just say "I've got a pinched nerve". That was enough. When I was in hand therapy, had the same issue, people had all these cool injuries… "ran my hand through the power saw", "smashed my hand in a door" type of injuries… then they would ask me what my issue was… I've got nothing to tell them! Nothing to point to as a cause… just woke up in horrible pain…

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@jjspokane61

@christo12345 Same for me… turned the compression gloves inside out… do not understand why they aren't made that way in the first place!! I was wearing my glove in the grocery store this summer… some snot hole teenage girls made fun of me! "Nice glove…". I really wanted to punch them in the face… at the time it made me really sad… I've got a little more perspective now… but STILL wish I could make them understand the hurt they caused!! Also found that wearing the glove opened the door for people to ask me what was wrong with me! Why was I holding my arm strangely and couldn't use it at all. Couldn't push the cart, couldn't lift the heavy items etc. Once you wear the glove they feel open to asking questions… which was fine with me… the problem was I didn't have anything really to tell them. I'd just say "I've got a pinched nerve". That was enough. When I was in hand therapy, had the same issue, people had all these cool injuries… "ran my hand through the power saw", "smashed my hand in a door" type of injuries… then they would ask me what my issue was… I've got nothing to tell them! Nothing to point to as a cause… just woke up in horrible pain…

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You’re making me laugh because I can really identify with you! Finally realized it’s better to walk along side the grocery cart and pull with good hand as opposed to listing to the right! Definitely a learning “curve” with this condition. ; )

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@chriso12345

You’re making me laugh because I can really identify with you! Finally realized it’s better to walk along side the grocery cart and pull with good hand as opposed to listing to the right! Definitely a learning “curve” with this condition. ; )

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@chriso12345 Yes… on the grocery cart issue… the first time I went and couldn't use my bad hand I just "powered" through by using my good hand… well guess what… that caused me trouble with my good hand! I used my good hand so much in new ways that I started to get trigger thumb! Then had to wear a brace on that hand at night too… did that for a few weeks and the thumb settled down and I've been more careful. One thing about this condition… it forces you to 'let go' and let OTHERS do things for you! My family has had to step up and do some of the things that I've always done… it can be hard to let go!!

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@confused1955 I wanted to mention here about hand therapy… talking with @patrick17 he reminded me about "buddy loops". These are simple velcro loops that they use around the index finger and tie that finger to your middle finger. You wear them all the time for awhile and that way whenever you bend your middle finger your index finger gets flexed (even a little bit) too. Just wanted to add this here for anyone else suffering from the 'stiff' index finger symptom. Make sure if you start hand therapy to ask about buddy loops if they don't offer them to you!! I did what you mentioned about the rice… but I got some small beans. I think the rice is a better idea! Alot of desensitivity activities during the therapy – alot of it is learning to live with the 1/2 numb hand and learning the difference between discomfort (it feels weird) and real pain (it hurts like hell).

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@jjspokane61

@confused1955 I wanted to mention here about hand therapy… talking with @patrick17 he reminded me about "buddy loops". These are simple velcro loops that they use around the index finger and tie that finger to your middle finger. You wear them all the time for awhile and that way whenever you bend your middle finger your index finger gets flexed (even a little bit) too. Just wanted to add this here for anyone else suffering from the 'stiff' index finger symptom. Make sure if you start hand therapy to ask about buddy loops if they don't offer them to you!! I did what you mentioned about the rice… but I got some small beans. I think the rice is a better idea! Alot of desensitivity activities during the therapy – alot of it is learning to live with the 1/2 numb hand and learning the difference between discomfort (it feels weird) and real pain (it hurts like hell).

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Hi, @jjspokane61 – thanks for sharing the information on the buddy loops. How have you found the hand therapy overall? Is it making the difference you'd hoped for? Would you suggest it to others with PTS?

@chriso12345 – You mentioned your first PT appointment went great. How has your therapy been going since that time?

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@lisalucier

Hi, @jjspokane61 – thanks for sharing the information on the buddy loops. How have you found the hand therapy overall? Is it making the difference you'd hoped for? Would you suggest it to others with PTS?

@chriso12345 – You mentioned your first PT appointment went great. How has your therapy been going since that time?

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I’ve been to PT 7 times so far and it’s going well. The therapist is working on my arm as well as my hand, concentrating on my pronator and my grip strength. I had an appointment with my doctor today for the first time in four weeks. He was encouraged by the tiny amount of movement I’m showing in my index finger and thumb since the last visit. I don’t have to go back to him for three months unless I need him for something. It’s still up in the air as to whether or not I will get 100% back to what it was, but I’m focusing on the positive!

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@chriso12345

I’ve been to PT 7 times so far and it’s going well. The therapist is working on my arm as well as my hand, concentrating on my pronator and my grip strength. I had an appointment with my doctor today for the first time in four weeks. He was encouraged by the tiny amount of movement I’m showing in my index finger and thumb since the last visit. I don’t have to go back to him for three months unless I need him for something. It’s still up in the air as to whether or not I will get 100% back to what it was, but I’m focusing on the positive!

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Hi, @chriso12345 – sounds like the PT is making a difference for your arm and hand. What types of exercises does the PT have you doing?

@confused1955 – You'd mentioned you had very little use of your hands and had burning sensations, and you also said you felt as though you were wasting and had lost quite a bit of weight. Wondering how you are doing?

@vgottlieb24 and @patrick17 – how are you feeling lately with your PTS?

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@lisalucier

Hi, @chriso12345 – sounds like the PT is making a difference for your arm and hand. What types of exercises does the PT have you doing?

@confused1955 – You'd mentioned you had very little use of your hands and had burning sensations, and you also said you felt as though you were wasting and had lost quite a bit of weight. Wondering how you are doing?

@vgottlieb24 and @patrick17 – how are you feeling lately with your PTS?

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Here's my input on PT for hand issues related to PTS. When I first went to my hand doctor my index finger was in a rigid state – I could only touch my thumb and index finger together at the very tip – with the index finger STRAIGHT! My grip strength was greatly reduced. The hand doctor did a steroid injection directly into the base of the index finger on the palm side. After the injection I waited for some great improvement – after 10 days I could make the tiniest of bends occur in the outer digit on the finger. I was so disappointed! But then I started with the hand therapy. I did 8 weeks of therapy, 2x's per week. First thing they did was the buddy loops. The real CORE of the therapy is the manipulation of the hand/finger by the therapist. Each week he would massage and slowly exert more pressure against the finger to get it into the bent position. I'm not going to lie… it was very painful at times. I was VERY motivated to make this work so put up with alot of pain to get there! Also there was ALOT of desensitivity training. Here's a list of things I did over that time: fluidotherapy – this is a machine with heat that is filled with corn "husks" – just little flakes of husk and get blown against your hand. Warms up your hand and gets it used to this feeling. Electric Stimulation in a water bath – this was like a tens unit giving mild shock. Was suppose to reduce inflamation? Did ultrasound on the finger and hand. As I started to get movement in the hand I did things like: picking up marbles with index finger against thumb, picking up "puffs", running hand through bin of plastic pellets, using clay — either pushing fingers into it, or pinching it with index and thumb. Using tiny vibrator on the finger. Did mirror box therapy… that was interesting… you put the bad hand in a box that has a mirror on the side. Then you place your good hand beside the box. You move BOTH hands through the motion of making a fist. You look at the mirror – so what you see is the mirror image of your GOOD hand making the fist. Although your bad hand (inside the box) is not able to make the fist you trick your mind and slowly your bad hand will move further than it did before. Not sure how effective this was, but very interesting!

I want to also add to this that during this time I also had 2 injections of steroid's in my spine (for suspected neck issues). While it wasn't for my hand, the Dr told me that steroid injected anywhere in the body with work on inflammation anywhere in the body. So its possible that extra steroid helped me get good results.

At the end of the 8 weeks, the therapist was finally able to get the index finger into the FULL flexed position. Once he was able to do that, I started doing it myself 2 or 3 times a day and then exercising the hand from fully opened to closed. Only a few minutes after having it fully closed I again can't make it close. But so much better than before!! I continue to have hand issues and I'm still on gaba… but I force it closed daily. I'm going back to the hand dr next week – I'm guessing he will do another injection. My hand is at 85%… I want it back to 100%!! My strength greatly improved once I was able to make a fist again as well. The hand doctors opinion is that my hand issues are caused by tendonitis that was brought on by the swelling during struggles with PTS. After this 2nd injection there is still potentially a "tendon release" procedure that can be done if I still don't get full hand function. I'll keep this blog posted on my progress!!

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@jjspokane61

Here's my input on PT for hand issues related to PTS. When I first went to my hand doctor my index finger was in a rigid state – I could only touch my thumb and index finger together at the very tip – with the index finger STRAIGHT! My grip strength was greatly reduced. The hand doctor did a steroid injection directly into the base of the index finger on the palm side. After the injection I waited for some great improvement – after 10 days I could make the tiniest of bends occur in the outer digit on the finger. I was so disappointed! But then I started with the hand therapy. I did 8 weeks of therapy, 2x's per week. First thing they did was the buddy loops. The real CORE of the therapy is the manipulation of the hand/finger by the therapist. Each week he would massage and slowly exert more pressure against the finger to get it into the bent position. I'm not going to lie… it was very painful at times. I was VERY motivated to make this work so put up with alot of pain to get there! Also there was ALOT of desensitivity training. Here's a list of things I did over that time: fluidotherapy – this is a machine with heat that is filled with corn "husks" – just little flakes of husk and get blown against your hand. Warms up your hand and gets it used to this feeling. Electric Stimulation in a water bath – this was like a tens unit giving mild shock. Was suppose to reduce inflamation? Did ultrasound on the finger and hand. As I started to get movement in the hand I did things like: picking up marbles with index finger against thumb, picking up "puffs", running hand through bin of plastic pellets, using clay — either pushing fingers into it, or pinching it with index and thumb. Using tiny vibrator on the finger. Did mirror box therapy… that was interesting… you put the bad hand in a box that has a mirror on the side. Then you place your good hand beside the box. You move BOTH hands through the motion of making a fist. You look at the mirror – so what you see is the mirror image of your GOOD hand making the fist. Although your bad hand (inside the box) is not able to make the fist you trick your mind and slowly your bad hand will move further than it did before. Not sure how effective this was, but very interesting!

I want to also add to this that during this time I also had 2 injections of steroid's in my spine (for suspected neck issues). While it wasn't for my hand, the Dr told me that steroid injected anywhere in the body with work on inflammation anywhere in the body. So its possible that extra steroid helped me get good results.

At the end of the 8 weeks, the therapist was finally able to get the index finger into the FULL flexed position. Once he was able to do that, I started doing it myself 2 or 3 times a day and then exercising the hand from fully opened to closed. Only a few minutes after having it fully closed I again can't make it close. But so much better than before!! I continue to have hand issues and I'm still on gaba… but I force it closed daily. I'm going back to the hand dr next week – I'm guessing he will do another injection. My hand is at 85%… I want it back to 100%!! My strength greatly improved once I was able to make a fist again as well. The hand doctors opinion is that my hand issues are caused by tendonitis that was brought on by the swelling during struggles with PTS. After this 2nd injection there is still potentially a "tendon release" procedure that can be done if I still don't get full hand function. I'll keep this blog posted on my progress!!

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@jjspokane61 – thanks for providing this information about all the therapy you've undergone for your hands with the PTS. I'm sure this will be very helpful for other members.

Was your doctor hopeful that you might get your hand function back to 100 percent, @jjspokane61?

I also wanted to ask @survivingpts in this PTS discussion to talk more about the acupuncture experiences mentioned that helped with PTS-related pain.

@vgottlieb24 – I believe you were saying you think that having acupuncture at a spa might be related to the start of PTS for both you and your sister?

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@lisalucier

@jjspokane61 – thanks for providing this information about all the therapy you've undergone for your hands with the PTS. I'm sure this will be very helpful for other members.

Was your doctor hopeful that you might get your hand function back to 100 percent, @jjspokane61?

I also wanted to ask @survivingpts in this PTS discussion to talk more about the acupuncture experiences mentioned that helped with PTS-related pain.

@vgottlieb24 – I believe you were saying you think that having acupuncture at a spa might be related to the start of PTS for both you and your sister?

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Update: I had the 2nd steroid injection in my hand 1 week ago. This 2nd shot was NOT nearly as painful as the first (I think because it was less swollen so there was more room for the extra fluid). As of 3 days ago, I am ABLE to make a tight fist now! The tendons are still tight – but less painful than before. I keep opening and closing all day long… so excited to be able to! I will continue with the gabapentin for now… maybe if all is still good with the hand in a couple of weeks I'll start another attempt to get weaned off the drugs! 2018 has NOT been a great year for me… excited to keep getting better and hoping for a much better 2019! So… the take away from this is… if you have the fixed finger issues due to PTS… make SURE you go and see a HAND specialist. Tell them to consider that this may be tendonitis caused by the swelling in your hand. I'm so pleased with my outcome at this point… I want that for everyone else suffering out there!!! Merry Christmas!! JJ

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