Help--re: pain in the butt

Hi folks,

Here it is 2:30 in the morning, and I can not sleep... the pain and ache in my right buttock is just too much at the moment. Well, it's been at it for a couple of days. Took some Tylenol... hoping they kick in, as I walk about a bit, and have a decaf tea. Does anyone else with a lower leg DVT have this? It hurts to sit on it... hurts to sleep... not sure how to get comfortable?? Saw my Dr. today and he thinks it's my sciatic... (on top of DVT? how so if my back doesn't hurt, doesn't hurt my butt when I bend, etc.???)... and will see how I'm doing in a week. Any ideas?

Thanks for being here!
B

I could sleep last night either. I have DVT in thigh and upper leg, but my left foot feels on fire every night...sorry to hear about your pains...what did doctor say?

Hi Annemarie!

Wow--so DVT AND PE? You are a lucky lady to be here indeed... thank God! So it's affecting your foot too hey? It's amazing how DVT creates such havoc isn't it? I read that your whole lifestyle must change for awhile w/o being able to ride horses.... that's tough... it's shocking I think when life has to change so suddenly.

My Dr. thought it's my sciatic nerve (but it doesn't feel like a nerve thing, as it aches deep in the muscle like my leg) and will see me in week to review. Hmmmm.....

hmmmm...hope you sleep tonight...and yes I am lucky to be alive. My insurance have a month waiting period and will only pay if I survive a month....so far 11 days from VQ scan an PE diagnoses and still going strong...have chest pains but not too bad though.

This condition realy force you to face your fears about death.?

I choose now to concentrate on faith instead of facts...I choose to live, but discovered it is not realy in my hands.

God Bless and I pray for you.

That sounds horrible... that the ins. co. will only pay if you survive a month?! You will be a-okay! And they'll pay!

Too bad I don't have insurance!! I am self-employed (so is my husband), so nothing. But the good news is that I've slowed everything down for the summer which is lucky timing... so I can take things a little easier.

What is the VQ scan? Like a CT Angiogram? (That's the one I had for PE.)

Yes, my friend asked me what it feels like to have a condition that is potentially life threatening and how it makes one feel about death. But for me, like you, I concentrate on faith and know that everything will work out as it needs to. I feel I've lived a good life... so much I still want to do of course... but when it's time, it's time. I've always tried to be in the now and enjoy the moment, an that's all one can do--enjoy life as much as possible. (You know the questions they say one must contemplate at the end of life: "Did you receive joy? Did you give joy"? If you watch "The Bucket List", they talk about those questions. Great movie!) And I did stop to think about this 2nd chance and how I can use it to help more people, and be the best that I can.

Did you see my post about spirituality/faith? My Rev. friend wrote a nice blessing for this situation.
My prayers are with you too Annemarie. You are a survivor!! And you will be back to riding horses before you know it.

Hey again Brenda :-)

Sorry to hear about the pain you are having. I did not experience anything similar. I did have the pain in, especially my foot, as Annamarie experienced - felt like my foot and lower leg was on fire most the time (which is why they suspected and treated Cellulitis at first).

Is the pain any better since you last wrote? I hope hubby is back home with you. How is the non-smoking going? Hope you are hanging in there ... every day is easier, I promise! Think what made me get over it is every time I felt like smoking I kept thinking to myself that I did not put myself through the hell of stopping just to give in now

I too so loved The Bucket List and recommend it to everyone I know ... what an inspiration it was.

Keep well

Best,
Madeline

Hi Madeline,

Hmm... then maybe it was the sciatic nerve after all. Still had it after writing, although last night I didn't so maybe that's over. Instead, I started to get mild calf pain cramps (light charley horses) similar to the beginning of my DVT but not constant. I feel like a hypochondriac now... watching every little thing... ugh!! Sounds like you've had your share of pains.... foot also? I had a little there for the first time yesterday... was like little cramps in my arch. I suspect this type of thing will continue for awhile hey?

Yep, hubby is back home... yay! I feel a lot better! The non-smoking is going ok. I quit last Sun., although had a temp. melt-down with my hubby on Fri./Sat., but got back to it. Fell off my horse for a moment, but got back up into the saddle. No more messing about! I ask myself what do I want more... to live? or die? Soooo, I'm going to pick living!! I've gotten back into my old routine of walking every day, as I remind myself that it's great for my DVT and circulation... been told to start small, so last week I have, and this week I'll add more blocks until I'm up to where I was prior to DVT at 45-60 min. at a time. (Although I wonder if the cramping is from pushing this? My Dr. says I should pretty much able to continue any exercise though.) But the fresh air is great and reminds me how awful smoking is!

Speaking of the Bucket List, I hear that the book is different and shares many people's stories. Couldn't find a description of it on Amazon, but saw it online at my local library (on my walk by the way!) and that it's on their order list, so I put myself on the wait list for it, to see the difference.

Keep well too... here's to a healthy & happy day!
Brenda

Hi Gismo

I am situated in the east of Pretoria on smallholding. Bosckop/Donkerhoek area.

The burning of my legs and feet started after I started wearing this stockings, but the burning is not on the skin, deep inside..and painkillers does not work.. Last night better though. Today only a bit of chest pains.

I started the blood type diet. I have read that blood group A are more at risk for developing DVT. Some foods can make your blood more sticky than others. I am gonna try it and will see after 6 months what the blood say.

Be good...

Hi Annemarie

Wow, that is interesting, I didn't know that - I am A+ blood type. I will most definitely try to find information about this, am interested to learn more.

OK, you are not that far from me - I am in Sandton.

I really hope that the burning in your legs go away soon! Even today I get that "dead" feeling in my leg where I had the DVT more than a year ago. Wonder if that feeling will every go away completely...I certainly hope so! The burning sensation for me lasted about 5-6 weeks I would say.

Stay strong, thinking of you!

Bye for now...

Hi Gismo

The website stating blood group A more at risk:http://www.utsouthwestern.edu/patientcare/healthlibrary/healthtopics/0,,P08252,00.html

My INR was too high today 4.6, Now I have to go again on Tuesday for tests.

My legs and feet feel better today. Chest pains gone..

Enjoy your day

God bless

Thanks so much for the website addie - I'm going to forward it to my family too. I'm making sure EVERYONE is aware of their risks seeing as it runs in our family.

Wow, your INR is high! What a pain hey! Mine was also high at 3.55. The lab is changing my dosage for the third time now to get it back in range.

Glad the pain is getting better. Shame, what an ordeal you've been through! Thinking of you and holding thumbs that your INR will be perfect on Tuesday.

Have a super weekend!

Regards,
Madeline

By the way Madeline... nice to get to "meet" you by seeing your smiling face on here! Thanks for adding your pic!
B

For several years I've had a pain in the buttocks (think I've been called that before). Anways, the Naval doctors blamed it on everything. I was referred to a physical therapist for what the doctor strongly believed was a sciatic nerve only to find out I have severe arthristis of my right hip. The Ortho said I must have been in a pretty bad accident to have it that bad; problem was I haven't been. Then again, there was that one time I fell off my mountain bike going down a cliff while racing and busted my collarbone. The worse part was I bent my handle bar on my brand new bike (talk about a real bummer)...

Anyways, Harvard Medical Center wants to perform hip replacement surgery - in both hips. If it wasn't for the fact that on long trips I just can't get comfortable sitting (always squirming to find a comfort zone) or that I at times have a hard time putting my shoe on my right foot - forget about tying them that's a task in itself (when are velcro shoes coming back in style) I would hold off longer on the surgery. It's becoming more and more inevitable that I need to have it. Will have to wait until my kids summer vacation is done and they go back to school (don't want to ruin their summer by not being able to go anywhere).

Anyways, that's my pain in the butt story!!!!

Ouch!! So your butt pain was due to your hips! Bummer that it needs to be done, but good news that Harvard Medical is doing the replacement because I assume you will be in the best of care then! So you'll probably get it done in the fall? How long is the recovery expected to take? Let us know when the time comes so we can send you lots of well wishes for a speedy one!!

Gismo Hi...my name is Mark, and I had a DVT (the result of an accident) in November of 07. I was placed on Coumadin for 6 months and just stopped three weeks ago. I had virtually no pain. Now, all of a sudden I have this burning thing going on.

I saw that you experienced the same thing...did yours happen after therapy? Any idea what caused it...my Doctor seems to think it is post Phlebotic syndrome, and the thought of having this forever is not making me happy. He told me to take Tylenol...it is really ineffective. Any tips on this in terms of what it might be, and how you treated it. The weird part of all this is my doc said my doppler was great, small residual clot that is attached to the back of my leg, but that is all.

Anyway, I find myself having to move around quite a bit. Sometimes it recedes, and I think..I am done...only for it to come back. Any thoughts? Thanks for your help and insight. Anything provide relief?

Mark

Hi Mark! I'm not Gismo, but while you're waiting for her reply, I just wanted to say a big "HI"!! It sounds frustrating to think you'll all done with DVT, only to have more pain come up. UGH!! I hope it disappears as quickly as it snuck in. Hopefully Gismo will have some ideas to share.
Take care,
Brenda

Hi Mark

Must say that the terrible pain and burning sensation was more when it started out and I found out that I had DVT (behind my right knee). The pain and burning sensation inward but also toward the outside, redness of skin etc. I also had the Doppler done after 6 months Warfarin treatment and they reckoned that all was fine.

However, I do still from time to time have pain in my leg but it is more on the inside and not the burning sensation of my skin which I experienced when first diagnosed. Not sure if this is the same as what you are getting? Painkillers also do not help me. When this happens, I make a point of elevating my leg wherever possible - even when working at the pc.

I had the DVT in Dec 2006 and still today I often have a "dead" feeling in my leg ... hard to explain but one is always kind of "aware" of the leg even if it is not painful every day anymore - it has not recovered to the point of feeling normal like my other leg. I have read that this is because your vein is damaged by a DVT and never fully recovers....don't know how true this is - I sure as hell hope this feeling will go away and return to completely normal. Sorry, not the news you want to hear, I know.

I know of someone else who had a DVT and PE a few years ago and she is back in the country after living in London for a few years. I will make a point of contacting her and will see what she reckons her experience has been. Will keep you posted after speaking to her.

Until then, keep well...

Regards
Madeline

Hi Mark

I also experience this burning in my legs but only during the night.. It goes away if I sleep om my side but if I lie on my back the burning starts again. So now I sleep on my side...

Hope you get better and that you get rid of warfarin for life...i can't wait i still have 5 months and 2 weeks to go....

Thanks for the input. The Warfarin did not bother me one bit, so if they put me on it for life, so be it. I only had this pain AFTER coming off coumadin (I have been off it 3 weeks only).

I could see if I had damage, but apparently my veins were vg on the doppler. I heard that compression stockings could help this, so I might give this a shot. I am a senior IT executive in Financial Services, and if I ever gave the same answers that some of these doctors do, I would be flogged.

Be well everyone...and thanks,

Mark