Sticky Blood-Hughes Syndrome Support

New Year New Pains Why???

Hi I hope everyone has a HEALTHY NEW YEAR! I get these upper body spasms in my arms shoulders chest(not my heart) it's almost like labor pains! It builds and then peaks! I don't know how much more I can handle! I'm going thru big dental work now and more pain! I'm just completely fed up & want to just stop all my meds and let nature take over! All these pills pills and more pills and my shots! Half the time I can't remember anything ! Did I take this at that time! My brain seems to be on overload and my memory is failing me! I do have sleep Apnea! I'm just very tired! I need to rest a lot today! My thx in advance for any answers to these neck shoulders chest spasms and if anyone else gets that!

17 Replies

Debbie I suspect that your pains may be due to the fact that you are holding yourself very tense when going through your dental work which causing you to have pain from tender points. These can be VERY painful. I would suggest finding a therapist who practises myofascial release as this will help to release these tender points that can originate in your jaw especially if you have been holding your mouth open for long periods of time.

Also make sure your Anticoagulation is at the right level as this will help to improve your foggy head. Until that happens set an alarm on your phone to remind you when to take your meds.

Hope things improve soon. Sending a big hug. X

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Thx Lynn! I've been under an enormous amount of stress lately! My friend said same thing that I'm a wreck under dental care! Many years ago a dentist broke my jaw pulling an unusually bad wisdom tooth! I had bad treatment after being wired shut for 3 months! No doctor wud take my case, so I went to Park Ave in NY! a very ritzy area! He was kind and apologized for the way I was treated by dental community! He also refused my case, but sent me to Chief of oral surgery at Mt. Saini in NYC! I had to have 6 operations plus bone taken from my hip to look normal again! Therefore I rarely stepped in a dentists off ice agin! I'm a wreck in any Dental office!!! Thx for ur reply and big hugs sent back to you!!! GODSPEED

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Lynn is completely right about tension in the body, I am sure we all do it in times of pain and stress, I have never had the type of therapy she suggests, although have heard of it. I hope you come through the other side with the dental work and breath a huge sigh of relief. I know from my own mix of disease, if I don't do my body scan Mindfulness Files daily, I feel more pain, also if I do not get to my exercise, which I try and keep daily, including some exercise outside, I definitely feel pain more. Also a sense of humour can and does always rescue me as a good laugh raises those endorphins, although of course some things are not funny, and dental work is not so!! MaryF

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Thx Mary for your wonderful reply! You're greatly appreciated for all u do and pray ur well!!! GODSPEED


Ooh debbweb01. I know just how you are feeling. I had 10 teeth removed in hospital in Christmas week!! Half a mouth. Waiting for other half to come out now. I so hate the dentist with a passion! I have said open heart surgery was easier, but then again they couldn't wake me after the heart surgery and I was in a coma for a month so by the time I woke up staples and most pain had ceased!! I have the myofascial release and I love it. I was having terrible neck ache and headaches every day and the physio worked on my stomach and hey presto pain gone!! She explained it to me that my head and neck were being pulled downwards as if I had a rope around my neck with the muscles etc pulling them forward and down so by releasing my stomach area I could straighten up again!! I go every week and she releases my lower back and then my head and neck. It can be a little painful at times but the release you feel is wonderful. Try it if you can.


Omg Debbie, u have been through a horrendous time. I'm sure every one of us would be tense and stressed in your situation. It is hard not to relate all future dental treatment back to your past experience. I hope u have someone who comes with u to support you. If you can plan something positive to look forward to later in the day or the next day and focus on that, it can help. Plan every last detail. Eg. Special lunch in a special place with a friend. (Or whatever you enjoy).

I am a meditation Instructor now and have practiced it for 35 years. I would highly recommend you look up the benefits and give it a try. In fact it will help everyone on here. It is non-denominational. It helps everyone. It is used for pain control by many. (I used it in labour and needed no other form of pain control)

I have recorded a led meditation. In my version I focus :

1st on relaxing breathing (important - but we forget to breathe properly when stressed.)

2nd on relaxing the muscles and every part of the body

3rd on quietening the everyday thoughts that rush through the brain

4th on guiding you to a safe place (in your mind) where you feel at peace and calm.

5th on guiding your mind back.


There are simple mindfulness techniques you could use. One I taught my son as a child is below:

As you look up at the ceiling from the dentist chair, find a mark, blemish, dot.

Stare at that dot. Blot out everything else. See nothing but the dot. Think about only the dot. Think about its colour, its size, it's shape, what it could be, how it got there. What it would feel like to touch. When ur totally focused u should find (with practice) u feel calm and relaxed. If u can't focus on it for long enough then find another one and start again!

I could email u my led meditation if you want to try it. I usually sell it so I ask u don't give it to others. 😃

Meditation can control pain, lover pulse & BP. Help lift depression, promote wellness, endorse feelings of safety, calmness & protection and so much more!!!

I'm sure it will help the spasms and help u get through your treatment. Good luck

I also went to a Tia Chi group for those with disabilities or weren't very mobile. Most do the class seated on a chair. A CD went with the class so we can practice at home everyday I found the class and CD really beneficial maybe there's something similar near you or you could even approach a Tia Chi instructor and ask if they could run a basic class for that group of people.

One more thing: my dad used to say to me, whenever I was faced with something difficult;

"Very soon you will be looking back on this!"

If you think about it it's very true - I make it my mantra

' I'll soon be looking back on this...'

Hope all this info helps everyone reading it 💋

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Thank you for that.

I came to think of when I got my first girl in 1974 in Stockholm. Before the birth we went on lessons with the fathers and learned to breathe and relax. No drugs just breathe and relax.

The fathers helped the mothers to focus on it as they also breathed and so in fact both parents together got the baby. I am lucky because It has always been easy for me to relax in a second. Perhaps I learned it then when I got my first girl.


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Wow thank you so much for all that! Of course I cross my legs my hands are tightly clenched and I'm stiff as a board! No I don't have anyone who will go with me, I'm the one who goes with everyone and when it's my turn it just don't happen! The night b4 last I had a melt down with a couple of friends here! You never want to see a natural redhead loose it! They headed for the hills! I didn't have to kik them out , one ran and the other two left fast real fast! Boy did that feel good! Yes that's over and now I feel better! My motto is, "This too shall pas." I'm very proud and will never ask for help! If people can't see that I have one leg, a hubby with Alzheimers, & a soon to be 60 yrs old, a mentally retarded stepson whom I adore and have cared for, for almost 40 years, then I don't ask!!! I'm way too proud at times and I send mixed signals to all! I lost my leg and I'm no different than b4! I'm still Debbie and I do like I did b4! Some good news, I got approved for a new leg just b4 the New Year and it had to be delivered to me b4 the 31 of December! So I guess they rushed in making my leg! As with a new pair of shoes u must break in the new leg! Adjustments and the like! My stump is filled with blisters that r not really blisters! The dermatologist have no name for what happen to my leg! They're a cros between boils, carbuncles, & blisters all rolled into one!!! Lol... My prosthetic leg guy said it's weird and has never seen anything like I get! Lol... what else is new!!! All I can do is laugh cuz if I cry, I cry alone, but wen I laugh the whole world laughs with me! Hahaha! So I shall continue to laugh and cry in private!!! Or to my APS FAMILY!!! GODSPEED to Y'all!!!


So sorry for my rambling! So busy with my silly stuff, I forgot to thank u for helping me! I shall try ur advice in dental chair! I never want to feel this pain again! Omg no pain meds worked on this pain! I just rolled in bed this weekend! Which is fine cuz it snowed and since loosing my leg, & getting a new one recently, I'm scared to death of the snow! Tomorrow I got another 2 hours in dental chair and I will most certainly use a focal point and dream of my road trip in early March to my concerts! With a real friend!!! I'm a groupie at heart and befriend many now famous musicians! I get them wen they just start and we get special treatment when they make it big cuz most don't forget where they came from!!! Omg I still go to Madison Square Garden with my gimpy leg! Yes it hurts to walk all those stairs, but when you get in that front row with your big crush, it's worth it and u forget all that pain while standing and dancing the whole night thru! Sorry Mary and admins if I'm rambling! I'd just love u to email the tai chi thing and wud pay u for it! One more thing after 8-9 months after I lost my leg, I woke up! It was during Christmas week and I was passed from doctor to doctor with 5 purple toes! Wen I got to hospital I use to work in, St. Francis, The infamous Heart Hospital, My vascular doc who I couldn't go to because of Mr. Obama came to my rescue! At midnight on New Years Day, he stood far away from me and yelled at me for going to some fly by night doctor and not coming to him! My reply was I couldn't come to u, you don't take my insurance! You he said I'd have seen for free! He still does see me for free! I worked with his wife on the floes of the hospital helping patients! He was my friend! I'm very lucky to have such friends! My heart doc who is head of cardiology there still sees me for free! So I guess my goodbyes to the world has paid it forward! I decided 8 mints later to sue the doctor that lost me my leg! I just found out I have a good case!!! My dream is if I get any money is to donate a leg, or an arm to one of our veterans who ar having trouble with how we treat our Veterans! GODSPEED!

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You sound a wonderful positive person who is having a very tough time at the moment.

None of us are an island, please reach out and share how u feel and what u need with those u trust.

Please send me a PM with your email address.

I wasn't touting for business with the meditation CD and do not want any money from you. I just want to help you. 💋


About a year ago I read something about body posture's influence on mood, and vice versa. The article suggested consciously maintaining a relaxed, open posture in the dentists chair. Dont cross the legs, keep your arms at your side with wide shoulders. This open posture will tell your brain not to expect pain, and you will then feel less pain.

I gave it a try and for me, this works! Doesn't eliminate pain, but sure reduces it!

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Yes Gina, that's all apart of it 💋


Debbie, you say that you are always there for others. May I ask how you feel when you are helping others in some way? I suspect it makes you feel wanted, useful, good, fulfilled, happy etc. I suspect that you feel positive because you have done something good for someone else. Am I right?

We'll have you considered that your pride i's denying others, those who love you, the opportunity to feel the same by helping you?

Part of our life lessons are to learn to help others and yet while you are allowing yourself to learn that; you are actually stopping others! Just a thought!!!

Sometimes in our attempt to prove we can cope with our lot, we create a tough shell around ourselves and we send the message. I am fine & I don't need your help! So sometimes we have to reach out of our shell to others. Sometimes our shell blinds others to what we actually need, so we have to spell it out to them...

Please stretch out your arm and say to someone;

"I know it looks like I'm coping, but actually I really could do with someone to come to the dentist with me next Tuesday. "

"I know it looks like I am coping but I really need a break. I need someone to stay home with my family every week for a few hours to give me some time to myself"

"I know it looks like I'm coping, but I really need to off load. Could we have lunch and a chat next week!"

See what I mean?

When people don't offer to help it doesn't mean they don't care it usually means that they just don't know what to do.

Please take a deep breath, choose the right person and reach out!!! Good luck, I'm sending you love, strength and light 💋



I'm right there with you. It's been a very long road to get there and I'm still struggling with asking for help but I make myself do it anyway. Even for the little things. I WILL take help out with my groceries, thank-you-very-much, and let the person who helps me out to my car take the motorized cart back to the store. When I'm have a bad APS day I WILL ask the attendant at the gas station to pump my gas since they can see from my license plat that I am disabled. I WILL make others in my household bring my purchases in from the car rather than carrying them up the steps myself because otherwise I will not be able to do more than sit in my chair for the rest of the day.

The hardest battle is with the medical community who want to pass me around instead of working together for an holistic answer to all my medical issues. I recently got a new rheumatologist who passed me to a hematologist for my APS thinking I didn't really have it. The idiot was adamant that my symptoms (I have had one PE but no other TIAs or clots) could not possibly be caused by APS but that I must have MS or Lupus or something else because APS is ONLY a blood related issue and nothing to do with nerve endings. I wanted to smack him. So I challenged him instead and said "If I don't have APS then there should be no reason for me to continue to take warfarin, right?" Boy did he back-pedal. Said that no, I should be on warfarin for life but couldn't point to why. Ha! So now I must go back to the rheumo for "another diagnosis". Obviously I need to find someone else to treat my APS. We have a multitude of really great doctors here in the Pacific NW but seem there is only one APS person and his forte is diagnosis, not treatment. So far I've not found anyone who will allow my INR to go above 3 but I am experimenting myself right now to see if going to 3.5 will alleviate some of my "non APS" symptoms.


Are you selftesting? You should be very careful before you experimenting with INRs. Are you Lupus Anticoagulant?



The answer to the first question is "yes", every week. And when I go out of range I can pinpoint exactly why and self correct the dosage way before my doctor decides what to do about it.. I'm pretty stable on my usual dosage only aggravated recently by a knee injury for which I'm alternating NSAIDs and aspirin for the pain and swelling. This makes it a perfect time to experiment with a raised level since it will be expected for the level to rise with the additional medication. As for the second question - depends on who you ask, who's doing the testing, and possibly the day of the week and relative humidity. Translation of all of the above - and THIS is MY mantra - The quality of medical care received by any patient at any doctor is exactly proportional to the least competent person on their staff.


Lupus Anticoagulant is one of the thre antibodies tested before a diagnose of APS.

It is usually not tested after Warfarin as it could interact with the result. Are you Lupus Anticoagulant that could make it more difficult for you to selftest. Do you have that antibody positive?

Are you sure the INR will raise with a new drug? It could also be lower.

It can take some time to get the right number and be stable there to notice any difference as to your symptom and probably you need to have an INR at least 3.5 - 4.0. Try to test more often than once a week. It takes 2 - 3 days for the Warfarin-tablets to work. I test every second day and I have LA and a differencee between a vein-test and a fingerprick-test because of the LA probably.



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