Skip to content
Severe pain symptoms
avatar
mona717 posted:
I have a situation with my back, hip, groin and leg pain that I am wondering if anyone has also experienced. I have had severe pain in the areas listed here since 2005, however for the last 4 years I get additional super-severe pain episodes that come on very suddenly, cause me to fall and then to eventually pass out from the intensity of the pain. I'm usually out for around 3-5 minutes - I'm told by others. Has anyone experienced this in their life too? What is the cause of your experience of this? What have your doctors done to help you with this? All of my many drs. and all of the hospitals and institutions and pain mgt. facilities I have sought help from tell me there is nothing that can be done to help me. Thank you for your feedback. Mona 717
Reply
FirstPrevious12NextLast
 
avatar
bj1208 responded:
Hi Mona - welcome to the support group -

first - what type of professional physicians have you seen for this? It's best to see both Neurosurgeon Spine Specialist and a Neurologist Specialist as I believe you may get some answers from them.

Second - what type of tests have been done? In my honest opinion either a CT Scan or MRI needs to be done possibly the following areas: Head, Spine, Leg and Hip area.

Lastly - have you discussed family history with your family (i.e., mom, dad, siblings, aunts, uncles etc) to see if there may be a family member that has experienced this and/or knowing all history may have a bearing on being passed down by hereditary means.

It sounds like something may be pressing on a nerve root causing you to fall. I have permanent nerve damage in both legs and I walk with a cane and also a leg brace on my left leg (it's worse than the right one).

Please let us know a little more about what types of physicians you have seen~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
avatar
mona717 replied to bj1208's response:
Hi bj1208 - thank you for your feedback to my initial posting. To respond to your questions, I have a neurosurgeon who specializes in back/nerve issues as well as a neurologist who also specializes in this area. I see the director of a very well known pain mgt. program at a local hospital. He did my SCS implant. I have a wonderful primary care dr. who manages all of my many medications and who keeps in touch with all of my other drs. as well as the hospitals, drs. and programs I have sought help from. I have several other drs. too for other issues. All of the above apologize to me for not being able to offer me anything I have not already tried. Several things I have tried more then once over the years.

Regarding tests that have been done - MRI's before my implanted SCS. As you know MRI's are not possible for people with implants. I have had several ultrasounds, several CT scans, several facet joint injections and several ESI's. My entire spine has been checked and rechecked several times. Each time the results show a progression of my spine disease. My cervical, thoracic and lumbar spine are involved in my spine disease. I have had 4 spine surgeries plus the implanted SCS surgery. In many areas of my spine I have no disc space at all. It is a bone on nerve situation for me in many areas. My discs that still have some disc material left are decreasing in disc space rapidly. I have testing every six months. My chief of neurosurgery will not do any more mylograms because of the lack of disc space. The needles just hit bone. I can not have surgery to shave some bone away from some nerves because I have several "nerve clumps" or arachnoiditis. Most likely surgery would cause severe damage to those "nerve clumps" which would put me in a worse situation. I have tried all of the different medications available for inflammation, nerve pain, breakthrough pain, short and long acting morphine, pain patches - etc. I am also at the maximum safe dosage of my medications. I have tried acupuncture, message, PT, aqua therapy, creative visualization, bio-feedback, breathing exercises, support therapy (one on one as well as group therapy). I have tried ultra-sound therapy, even hypnotism - all with either no positive effects or short lived positive effects that go away as my condition deteriorates.
Regarding family history: My condition is most likely congenital. My maternal cousins (2) have some of the similar issues that I have. Both are male cousins. My drs. are aware of the family history. Like you, I also depend on a cane and often a walker too - it depends on my pain level and leg strength at any given time.
I'm sorry for the length of this posting, but I wanted to give you as much info. as possible. I may have forgotten something, but maybe not... Any ideas? Thank you for your feedback.
Take care and may you find many small moments in every day to make you smile.
Mona
 
avatar
bj1208 replied to mona717's response:
Hi Mona -

Don't apologize for the length of ur post - it's a way we get to know new members.

You can click on my name or picture and read my story. I too have been thru everything from A-Z as far as treatments etc. and I understand your pains as my entire spine too has the wonderful degenerative disc disease that is hereditary.

There are a couple of suggestions for you~~

1) You really should see a PHYSIATRIST Pain Specialist - they go deeper into pain management control. I have been seeing one for about 5 yrs now and they are a life savor. The reason I am suggesting this type of doc is some primary care docs will get scared at dispensing pain meds to a patient as they do get investigated and some will have restrictions and/or may never be able to write scripts.

http://www.spineuniverse.com/treatments/what-physiatrist

2) Have you considered a Pain Pump Implant? We have a member (TRS1960) who just recently had one and it has really helped him. I will see if I can get his attention to reply to your post.

There are quite a few of us that are "old timers" for this support group. We do pride ourselves in helping those that are at wits end etc. We basically have had everything done, with each one of us being different on what works and what doesn't work. We don't mind those that want to vent, looking for help, or just a shoulder to cry on.

Let me know if the suggestions will help. Right now I will be speaking to my surgeon (had 2nd fusion done 12/4 and in so much pain) about the pain pump implant. I too am at wits end for my pains but I do keep my chin up and try to but it is hard when you do cry every day. But I accepted this life when I became disabled and do try to make the best of it.

Take care~~
~~ Click on my name or picture and read my story ~~
~~ Joy ~~
 
avatar
bj1208 replied to mona717's response:
Mona - also I meant to ask what meds are you taking to help with the nerve pain issues?

I take Gabapentin (generic for Neurontin) which helps greatly with the nerve pains in both my legs as I do have permanent nerve damage in both. Before my last surgery (12/4) my left leg was worse (still wear leg brace) but since my last surgery my right leg is far worse that left leg.

I take 3600mg a day (1800 2XDaily) and if I miss a dose I can start feeling more pains within a couple of hours. You are probably going WOW at the mg I am taking but this medication (same with Lyrica) must be started out on a very low dosage and dose up over a couple of months. Some docs think taking 900mg or 1800mg is a therapeutic dose but it's not. acutal therapeutic dose is around 3000mg up to 3400.

Just wanted to see if you were taking anything for that~~
~~ Click on my name or picture and read my story ~~
~~ Joy ~~
 
avatar
mona717 responded:
Hi, Thank you for your reply. I have tried Neurontin, but had a very severe reaction to it. I developed migraine level headaches that put me right in bed for several days. Now I take Lyrica. I have also tried Cymbalta, but had a reaction to that too - skin blisters all over my body. I also took Elavil for nerve pain, but had another severe reaction to it too. I have talked with all of my drs. and they all say that there is nothing else out there right now.
 
avatar
needanangel replied to mona717's response:
Hello Mona,

I am new here as well, in fact, this is only my second post. I clicked on your post and upon reading it was really amazed at the similarities in our surgeries & your current symptoms.

I do need to say however, I do not share your spinal disease in all three sections of the back. I am only primarily affected at my thoracic and lumbar. My cervical issues are from a lack in curvature. I get horrid migraines from time to time, but, have not considered surgery. I went to a chiropractor from the age of 13 - 18 (so long ago!) to regain some of it. But, of course, it is a problem that will never be 'cured.' Gosh, I learned a long time ago, with my spine, nothing is ever 'cured' or 'fixed.'

My major problems arose from heredity and a car accident (my mother started having surgeries at the exact same age I was and after a car accident as well, even if her or I would have never had the car accident, we would have had to have had surgery anyway for spinal degeneration).

I have had four back surgeries - a laminectomy, two fusions, and a SCS as well. My SCS was put in almost two years to the day. The SCS was suggested to me, albeit, almost pushed upon me because of the severe nerve damage I have in my legs. My left leg, the worst one, is numb from the knee down and my right leg experiences - well, the feeling that it is being submerged into a vat of hot oil 24/7. I can hardly stand a stitch of clothing on my foot, even with Neurontin in conjunction with Gralise (although, it is definitely not as intense). When I say it like that, I guess I do not really know which one is worse? The SCS was 'pushed' upon me because of my age. Every doctor that I went to did not want to see someone who is close to forty on a lot of medications. But, as probably most people here know, sometimes it is unavoidable. No matter how much I do not want my life to be in four-hour increments...it is...

One thing that I was a bit upset about with the SCS was since I produce an unheard of amount of scar tissue - it is pretty much a failure. My surgeon knew my body produced a lot after the first surgery. He knew it after he had spent most of the second surgery clearing out scar tissue. This was repeated for surgery number three as well. When someone like me heals too quickly, and develops a lot of scar tissue...the SCS is hindered badly. And, so, I will probably have it taken out as soon as the battery dies.

To your passing out with pain. I have been experiencing this for the past 6 months! And, honestly, I thought I was the only one doing it. Fortunately, I have only had this happen twice. Since I have so much nerve damage in my legs, it is really easy to hurt my lower legs and feet without knowing it and I am always scared I will break something or God forbid hurt my back worse. I notice that the pain is worse where my nerves bunch up - hip, knee, and ankle - although, a little different than you, I also have it hurt near the front of my body (around where my ovaries are). I have searched on the web and haven't read anything about it. The only thing that I was told thus far - was that the body reacts strangely to pain sometimes. I had pretty much accepted that answer because I shake and sweat at times when my pain is really intense. My back has also gotten 'a fever' too. If you do find out any answers, I would be so happy to know as well!

Sending smiles back to you
 
avatar
mona717 replied to needanangel's response:
Hello and welcome. I'm so sorry that you are having this problem with your back. Yes, like you I crop a lot of scar tissue too. My new neurosurgeon and my neurologist and primary care dr. and Pain Mgt. dr. all think that some of my pain is because of the scar tissue that the SCS has caused. The stimulation does still help somewhat, but not like it did when I had it implanted in 2006. However, I will take whatever help I can get. If I had the SCS removed and the scar tissue around where it had been, I would only re-crop more scar tissue from having it removed; a no win situation. I don't know what the answer is - there does not seem to be one according to all of the drs. and hospitals and facilities I have been to. Lately I have been passing out more then usual from the pain. I have had 3 or 4 passing out episodes after a very severe pain episode for the last 4 days. All my drs. can say is that it is my bodies way of coping with the excessive pain - it just shuts down. I am discouraged, but I refuse to give up. Each and every day is a new day that holds possibilities. Hang in there. (Mona)
 
avatar
mona717 replied to bj1208's response:
Hi bj1208,
Thank you for all of your feedback. Yes, I have considered a Pain Pump Implant in the past and even recently. However, my neurosurgeon who is very well respected by other health care professionals, has advised against it in my situation. He said that since I crop so much scar tissue quickly that I would most likely have issues with the catheter coming apart, which would require further surgery. Also, the additional scar tissue will only cause more pain for me and will put more pressure on the many nerve bundles I have. He said also that he has had to remove about 3/4 of the pain pumps that he or others have implanted as they either disconnect, or build crystels around the neck of the pump, or they migrate, or they are so difficult to re-infuse with medication that attempting to re-fill the medication holding tank is a very painful process for patients with many, many needle sticks attempting to locate the port since it keeps moving. He also said that tumors have a tendency to grow around the catheter which requires more surgery. Mona
 
avatar
bj1208 replied to mona717's response:
Hi Mona -

WOW!! Your surgeon has a keen eye on you and on others that have had problems with the pump implant.

I too have been considering it. My Pain PA keeps asking me if I have talked with my surgeon about it.

His thoughts are that pain pumps are a short term pain medication usually for those with terminal illnesses. He keeps pushing me towards the SCS implant (not Medtronics one) but one he gets thru St. Judes - it has a flat panel that is put in around T5 or T6 - he usually has patient go in for MRI and CT Scan so that he can make sure there is room to put it in saying sometimes he has to shave off part of the disc in order to fit it. He has numerous success stories posted on his office walls (picture size) of ones he has helped - mostly amputees but a few that have chronic back pain and some that have shingles. But still I had a horrible experience with one (Medtronics) back in 2008 where I left office in tears cause of the worsening back pains - it took away the pains in both legs but increased back pains tri-fold. I had it in less than 24 hours - spent an hour on phone with rep trying different strengths etc. only satisfaction was when I turned it off and reduced pains down to my regular pains. so I went in next morning and had it removed and when the nurse pulled the leads out there was a tremendous pressure relieved. Oh the doc was pissed and wanted to try and move leads to other areas and I told him NO.

Even though my surgeon has a lot of success stories with his SCS implant I still have too many horrible remembrances of the ordeal.

my Pain PA is worried as I am at the maximum dosages for the pain meds I take (Morphine Sulfate 60mg 4XDaily, Roxycodone 30mg 4XDaily, Gabapentin 3600mg daily) she is mainly concerned with the morphine and oxy as the combined amount is the max for me as relates to age, height etc. So guess I will be discussing the pain pump again with my surgeon. He also said there are problems trying to find pain clinics that will inject the solution. makes ya wonder if there are too many problems. hmmmmm...........


Later~~
~~ Click on my name or picture and read my story ~~
~~ Joy ~~
 
avatar
mona717 replied to bj1208's response:
Hi bj1208,
I hope that your day today finds you in less pain and with many small moments of laughter. I can understand completely your hesitancy to implant another SCS given your experience. All I can say is do your research ahead of having it done, and even ask the dr. who will do the implant to provide you with the phone numbers of 4 -6 people who have had this done and who are in a similar situation as yours is. Your dr. will of course have to get the permission of his/her patients to give you their phone number (or perhaps your dr. can give the other patients your number so they can call you). I spoke with several people prior to implanting my SCS and also other patients as I considered implanting the pain pump. It was helpful each time. I figure that in order to make an informed decision with something as important as this that we have to be our own best advocates. I hope and pray that you are able to do this too and that it will be helpful to you. You may find that your dr. will be a little resistant about having you speak to her/his patients, but I suggested to my dr. that he would want to have as much information as possible if it was him or someone he loved that was in a situation similar to mine. He got the point then and provided me with 7 people to speak with. Each person called me rather then me call them. Let me know if this works out for you. Best of luck and blessings.
I just had something upsetting happen late yesterday afternoon. I had knee Meniscus surgery the middle of Sept. last year. After the surgery I experienced a lot of problems and went to PT for ultrasound therapy on the knee. It worked well, so I decided to go for the same on my other knee. My orthopedic surgeon that did the surgery did the referral as well as my primary care dr. Well, with all of the bad weather we have had this winter my pain levels and my severe pain episodes that cause me to fall and pass out from the intensity of the pain have increased. Yes, weather does really sometimes effect pain levels. Well, my therapist decided yesterday to notify me by email that I was being discharged from PT due to my increased pain and my increased passing out episodes. She feels that she can not help me. I wish she had brought me into this decision making process so we could approach it as a team. It feels like once again a door has closed in my face. Is working with me difficult - yes, but if I was a therapist I would not give up on my patient so quickly and definitely not before I talked "with" her about the situation. It feels pretty hopeless right now. I know that I will bounce back in a few days, but right now it seems like she was just covering herself in case I got hurt at PT due to passing out. I offered to sign a waiver, but she said it was not necessary. I pray that she nor someone she loves never experiences what I am facing and what you all are facing. If she does, then I hope that she has better luck in finding someone willing to think outside of the box so to speak and who will be willing to hang in there with her. Take care. Mona
 
avatar
bj1208 replied to mona717's response:
Hi Mona -

I am so sad this happened to you - that's a pretty shi-tty thing to do to a patient - how informal sending an email. I now my blood levels would be boiling and I would have to wait a couple of days before thinking about how to respond to that. First though I would request copies of your records from them. This way maybe something is written down that maybe you could address with them.

I agree you should have been brought in for a meeting to discuss this. I've had this done many times when I was shipped from one pain clinic to another until I was referred to a PHYSIATRIST Pain Specialist and have been with them since 2009.


I live in MO - so I am well aware of weather being a BIG factor in pain levels. A couple of years ago we had a really bad winter where it snowed over a foot before during and after Christmas - two years in a row same pattern. We also had sub-zero temps (not wind chill but temps) and I was in so much pains all I could do was cry (same since my last surgery too) and I mentioned this to my pain PA that I didn't know what was worse - winter or summer. She looked at me as though I'd hit her with a rock - she asked why and I told her with winter it's the cold temps, humidity levels being low and dew points being low as well. Told her in summer you have hot temps in 90's to 100's, lots and lots of high humidity and also high dew points. Barometric pressure also plays a factor.

We too have had lots of bad weather. The first of February we had over a foot of snow and then low temps, sub-zero temps and windchills below zero. Snow stayed on ground for 1 1/2 weeks then temps rose and we had rain!!! Who says you can't have all seasons in one day!!! LOL Think just about anyone can see this living in the areas that have snow etc.

Hope your day is going well. I was up from 11pm last nite (slept for 2 hours) til 7am and then I laid down for 2 hours and slept a little. Still in lots of pain today. course our weather is being strange. 50 degrees out with 50mph wind gusts with rain/snow showers possible. so gonna be one of those days.

Take care~~
~~ Click on my name or picture and read my story ~~
~~ Joy ~~
 
avatar
mona717 replied to bj1208's response:
Hi bj1208,
I wish that there was a button we could all push to not only take the pain away from ourselves, but also away from each and every person experiencing this situation in their life. Thank you for your support re: the thing with my physical therapist. It is ironic that she failed to recognize that the increased pain was from the weather most likely, at least a possibility. This is her field and she should be versed in the effects of weather on pain, edema, and stiffness. But, everything happens for a reason. There is either something that I am supposed to glean from this experience, or maybe a greater empathy I am to gain. I did email her back and spoke my mind, respectfully, but I still said what I needed to say. I can only pray that somehow she will gain knowledge from this that will help someone else. Have a good weekend. Mona
 
avatar
bj1208 replied to mona717's response:
AMEN, sister, AMEN~~
~~ Click on my name or picture and read my story ~~
~~ Joy ~~
 
avatar
mendy44 replied to bj1208's response:
Hi Mona,
My name is Mendy. Medtronics assisted by my pain mgt dr implanted a pain pump. It took a while to get it set to proper dosage, Im at 10 miligrms a day with morphine fentynyl and diladed. The Dr implanted it in my lower right lumbar area, but had it switched to front right abdomen because i lost alot of weight (actually quit spending all my waking moments in front of tv!!) and the pump had nearly flipped over. Since the relocation all has been well, there are always going to be times u over do it and your pain level exceed your meds, but that is a live and learn and never stop trying to do more. Best of Luck.


Helpful Tips

Making the Most of Your Doctor Visit #2Expert
Here are the rest of the suggestions (had to break into to two parts due to the character limits) 5. Make sure that all records ... More
Was this Helpful?
27 of 41 found this helpful

Helpful Resources

Be the first to post a Resource!

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

For more information, visit the Duke Health Spine Center