How many of you have that horrible pain on each side of your lower spine? It is inches away from the spine on both sides. It is up a few vertebrae from the end of your tail bone. It is full of lumps of course. It makes is impossible to sit without pain. Even in my own recliner it hurts…restaurants are impossible…I can hardly stand to sit long enough to eat. I wish everyone would use cushions on their kitchen chairs! The fashion now is for the hard high chairs with no cushioning and they kill me. I can’t climb up on those high stools! I would like the young to realize that even if they don’t need porch railings and cushions on their chairs their older guests may well need these things! Back to the “pain in the butt”…As I sit here I have to lean over to the side to stretch the piriformis muscle so I can type. Have you been told you have sciatica or piriformis syndrome? : ) Hugs, Grandma Sylvia
HI SYLVIA
This is wierf i have 2 large lipomas on eash side of spine above hips and when these swell i cannot bend twist or even walk all i can do is shuffle, my respiratory consult organised a mmr years ago as he thought they might also be shwannomas because of pain and symptoms guess what. thats right nothing we can all feel them but nothing will see them they are noe the size of ping pong ball each side. rely on my pain meds and get on with it as you do.
gentle hugs HELEN
Wow! I hope Dr. Herbst reads what you just wrote…It would be strange to stumble onto that when I had no idea it could be related to that shwannoma thing which I never heard of until two days ago! I need to think about this and talk to you and cgoldstein. I wonder it they (the shwannomas) show up on x-rays? You know I had the injections into that area in June by a pain doctor and went into horrible pain for a month. Maybe he made them mad! I need to have you and cgoldstein over for tea and we can talk about it! The problem is it is a long way from your home to mine. You know what they say “the path to a friend’s house is never too long”. I think cgoldstein is going or did go to see Dr. Herbst. I wonder if the topic of shwannomas came up? Do you mind telling us cgoldstein? I am very tired due to my inability to adjust to the CPAP mask so I will (like Scarlet O’Hara in GWTW) think about it tomorrow. I am going back to the respiratory therapist to see what I can do about the oxygen in a few hours. Maybe we are on to something! Hugs from Grandma Sylvia
Brennie,
Please check into Myoclonus or Myoclonic jerks. You may have something like that going on with your legs. There are meds available to control that somewhat.
Hugs and spoons,
Pamela
I dont have lipoma in my butt near my spine…well i cant feel them if i do, i do however have sciatica on my left side, i also get pain from inside my left hip on the front too.
If i stand too long my lower spine hurts like hell, I cant even wait 5 mins for a bus. It hurts standing in a shop queue, if i sit too long i cant walk, until its lubricated, i mean i have to walk around 20 steps before its normal. I do often get a numb botty by sitting too long, and thats quite often at work too.
Butt pain, that is such an open door!!! I have terrible pain in the periformis muscle, and I know I have a herniated disc in L5 S1, the pain in life altering as you well know. I can’t stand at the stove, sink or doing anything standing for very long. When I shop I have to have a basket or cane to lean on or the pain becomes unbearible. I try not to use the cane it upsets my kids, because it scares them, especially my youngest son. He as aspergers and has many fears, and he always tells me how he doesn’t want to “lose” me. That is hard to take. He is so sweet and loving. But the poor kid is fourteen and puberty has arrived, we are having a great time…
I have been having so many problems with my legs jerking and when I drive my heels become extremely painful, my chiro and massage therapist tell me its the sciatic nerve and the periformis. I just know after driving for any period of time I can barely walk. But if I am the passanger I get motion sickness so bad I want to throw up. Traveling is no fun. I can’t give up driving yet, I am too young and I will not have to depend on my husband to take me to see my daughter whenever I want to go, that would be all out war.
I don’t get deep tissue massage in the legs, only a soothing swedish style when I get one. Deep tissue is way too painful in my legs. The DD tissue is more defused in the legs and extremely pain to touch. And my legs feel like they want to draw up and then start the jerking when I lay down. They are making life very difficult. It is making work very difficult.
But back to the butt ha, I am with you ladies DD is literaly a pain in the a$$. Yesterday my Lab Lilly ran into my leg and I thought I was going to pass out the pain was so bad, today I can hardly move, she must have really jerked me around without me realizing it because my neck and shoulders are killing me today too.
Hi Sylvia,
Yes, I have been diagnosed with both piriformis syndrome and sciatica. I also have spondylolisthesis and a huge clump of tumors in that area. It is excruciating and has been the worst pain on my body since my late teens. I have learned to sit on the edge of my seat so that I don’t put pressure on the area by leaning back. I agree about handrails and hard chairs. I go to various people’s homes to do signings and many don’t have railings on their porch stairs. I have to use my cane to get up their steps , and I worry I still won’t make it.
Hugs and spoons,
Pamela
Hi all, ladymary here…I have the large lipomas in my lower back near the buttocks so I know what you all mean. I had two very large ones removed 1 1/2 years ago and now they are back where the incisions are. They were 8 cms. and 6.5 cms, pretty large…I have pain there all the time and i too hurt if i stand at the sink or stand for very long…also if I twist or stoop it is painful. I’m having pain non-stop when i lie down or sleep as the areas ache like mad, hips, lower back, shoulders and neck etc. Today I’m feeling better but had to put AC on as I’m constantly hot…had a new bit of itching today too on the increased pain areas, weird. I’m seeing my dr. tomorrow and will ask about swannomas things, can’t remember how to spell it, about oxygen and about memory. I’ll write and let you all know what i learned. take care all, Bev
Thanks Pamela I am going to do that. It is really beginning to interfere with me a work, setting in a chair for long periods of time are getting tough I will start shaking my legs because I feel like I need to move them or they go to sleep and I lose feeling in them and God help me if I get up and walk before I get them ready I will fall on my face.
Maybe we all have the pain…I asked Dr Herbst and she suggested maybe a back mouse…If any would like the article she sent me on back mouse I will gladly send it on just email me…I was looking for answers on why I hurt so bad in my lower back and she sent me that article…
Boy are we all pain in the butts! It really is the very worst DD area of pain and I have it all over my body. I think they diagnose sciatica and priformus and the sha…sha sha ding dong whatever it was…when it is probably all DD. I read that some people (like all of us) have the piriformus muscle going through the sciatic nerve instead of around it and that causes the muscle to tear up the nerve or vice versa. I would be happy to have surgery if it would help. So, Lady Mary had them removed and they came back! Oh, that must be awful to go througn having that surgery for nothing! I am so sorry Bev. I wonder if Dr. Herbst has looked at the tissue from the shwannomas compared to DD tissue…Bev, ask your doctor about the lipomas on each side of your spine and tell me what he/she says. If I could just get that one pain to stop I might be more interested in life. Geordie…press real hard and see if you can feel DD lumps on your lower spine or ask someone else to do it. When my husband tried to massage mine it was horrible pain. The ones marching down my sciatic nerve in my leg are like trying to sleep on marbles. Also, my husband says the skin is red around them. They all feel hot. They are so tender! The DD can’t stand to be touched. I endured many sessions of massage that involved putting pressure on the lumps until they felt smaller. It was Hell with a capital H. I endured it to make them get better but instead they multiplied and got bigger. When my husband tried to massage the ones around my ankle bone I ended up not walking at all for a month. This priformis/sciatic pain is the absolute worst! Standing is impossible now…I give up…I am letting my husband do most of the cooking. I can barely walk…just a few steps…I use a chair at the sink and keep standing up and sitting down…if I am determined to make a salad or some other difficult task! I used to clean the whole house in a day. After age 55 I just seemed to get so much worse…now I am much worse every year. I just mostly gave up recently and got a wheel chair and that has improved my attitude as I can participate in life again somewhat. Brennie, your son with aspergers will be fine once he gets out of school. My son has it also and he has a good job now and does fine. He took off as soon as he got out of school. He is a computer guy! I still don’t tell my adult children how bad I am and they still don’t cut me much slack. Pam…since we have everything the same all the time…if you ever find help I am counting on you to let me know. Hugs to All My Peeps, Grandma Sylvia
Sorry that I didn’t get a chance to reply to all this GREAT information! I have been so busy. I decided that if I can’t get out of bed I am going to campaign for US. I will tell you about that later. Let me tell you that I am a huge pain in the butt. I don’t think that there is any given moment that somewhere around that hip/gluteus maximus junction that doesn’t hurt. Matter of fact, my hips and thigh area was the first spots to develope the painful lipomas. I now have atrophe in my right hip. I regretfully am not able to fly to San Diego in October. I did find out though that there is a golf benifit that is for DD in West Warwick, RI on Oct. 11. From what I understand is that Dr. Herbst is supposed to be there. I have family there so I think it is time for me to go visit. LOL. I was invited to come so I probably will be attending. I am fast becoming a renegade for awareness.
About the schwannomas…I do have lumps on my spine, 3 about the size of a ping pong ball at the base of my spine. One for everytime I had a lumbar puncture. I don’t know if that is what they are. I am curious and so is my grandmother. She suffered so much pain from hers. Grandma Silvia, did you have any other questions? I am here if you do. Hugs to all and NO spankings…we are tooo tender back there. LOL
That is so interesting! Maybe they do form where we have had injections? I have had several spinals when I had a baby and when I had D&C’s. The aliens do not like it when we bother them! I hope that you do go to see Dr Herbst and that you give her the info about the Schwannomatosis. Do your ping pong balls hurt like crazy? Have you been told you have a piriformis/sciatica problem? That is what they tell most people. I can’t stand the pain in that area. It is never ending! I need a break! Have you ever found anything to help your ping pong balls? You are so smart! Maybe you can find out something…you are trying hard to find some help. Keep letting us follow your progress as you try to help yourself. You are relatively new to the battle and give us fresh hope that you will find some help! I appreciate your offer to help. You are a very sweet person. Hugs from Grandma Sylvia
Hi Brennie,
Never assume all of your symptoms are from DD. My legs have been going numb because of a condition of my spine. I ignored that for a very long time thinking it was from the tumors back there. DD is the gift that keeps on giving, and many of us have multiple conditions.
Hugs,
Pamela
Sylvia, you will be the first to know! Don’t count on me though. My approach is to pretty much leave well enough alone. I will not have anything done about my lumbar tumors or spinal condition. I’m sure its too late.
Hugs and spoons,
Pamela
I had severe “butt pain” when I was pregnant with my twin boys. (14 years ago) All of my labor was in my butt and let me tell you…the 2 days I had was excruciating. They told me that I had sciatica. They even went as far as injecting a bunch of trigger points in my spine. The worst one was the injection directly in my lumbar under ultrasound. That did work for some time however it was expensive. I had about 2 months of relief.
I asked my doctor for something a bit stronger for my pain today and he up’d me to vicodine 5mgs. HA! ok that is like taking baby asprin. I asked for a referral to a pain specialist. He said that he works 70 hours a week and he doesn’t have time to research. I know it is time to move on from him, I am just struggling trying to find someone that wants to take me on. I don’t have insurance (we alway pay cash when we go) and also doctors are afraid to touch me. What do they think they are going to catch it or something? LOL. I think that they are afraid of lawsuits. It is so frustrating. I will find someone though. It is just going to take patience. Thank you for the kind words. Where is everyone from? I also have another site that is just starting up if anyone is interested in visiting. it is called mdjunction.com. I am the moderator for dd. There are somemore people over there that I don’t think are on this site.
Ping Pong anyone? Gees, my ping pong balls were the ones I had taken out and i don’t regret it. I had good relief for a year and now the pain has returned but smaller lumps…I had them out because they were so large that i couldn’t sit back, lie on them and they restricted my movement big time. I know exactly the location you are all speaking of it is awful and so darn tender. My lower back near the top of the buttocks is my worst pain, the hips next, then the neck (hump) and out to the shoulders, my thighs being last. I also have a tire around my waist, large inside thighs and large upper arms…My back has rolls of fat that hang down slightly, wearing a bra is like wearing a corsett pulled tight…everytime I find one that fits ok I need a larger one…good grief…now theres’ two lumps I could do without…hee hee. Ok, enuf, talk to you all soon, take good care…Bev
Opps forgot, hey CGoldstien, maybe i’ll see you in R.I. i live right outside of Providence…hey that remins me, if any of you ladies or gents are veterans you can apply for health care at the nearest VA, it is much, much cheaper and i love my Dr. there. Just a thought. Bev
I have that fat on the inside of my thighs. Oh how I hate it. Mine recently swelled up and there is a large one there too. My hands have been excessively swollen too the past few weeks. I can’t even get my rings on anymore. I would love to see you when I go there landmary. I think it is great that more than one of us will be there. I can’t wait to meet you. Is anyone else from this group going. If I don’t get a reply I will put it in as a new question.
I will be 52 next month. I knots all across my lower back and butt not much places i don;'t have knots. back of my knee and leg was itching for about a week. now from my hip all way to my ankle is hurting my knee feel like someone is twisting it when i walk. energy is horrible can’t go very fast a all the turtle would beat me. does anyone have this pain and does it go away i think it is the knots . just got out of the hospital to see about the seizures i was having he said they are really butt phycosimatic non epileptic seizures.
in other words anyone else would get stomach ulcers but i was lucky i have seizure i know is do to the pain they took my blood pressure it like to kid me i feel back asleep and went into a seizure instantly. i’m knot sure i can take anymore of this pain like this i have always been pain tolerable but i would rather have 39 babies with back labor than this pain. does anyone else have this leg problem is the what you are talking about grandmasylvia
love teresa