nerve pain : Had phone call today from pain... - Pain Concern

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nerve pain

SARAHHOUSE67 profile image
30 Replies

Had phone call today from pain clinic so they basically i was told to learn to live my pain and would like to see by psychologist what joke she said i will be seen in a group to tell what all about I am fuming I am in lot pain by she cannot give me medication but try to get me off medication by exercise.so lets see what happen its disgusting the way she spoke to me as well no need to be rude . I had enough so much money wasted by these clinics. instead, you being sent to the right doctor in the first place then would be on the right medication sorry for the whining I am so angry.

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SARAHHOUSE67 profile image
SARAHHOUSE67
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30 Replies

Im so sorry u r going through this. Ive been there many many times..no one deserves treatment like this.These people don't suffer like we do n that's why they are the way they r. If they had to deal with what we do on 24/7 basic they would never survive. I send u " strength".. don't give up looking for the right doc(right fit for u) n keep posting. Im here if ya need an ear to listen. :)

SARAHHOUSE67 profile image
SARAHHOUSE67 in reply to

thankyou

I know exactly what your going through and know one should suffer like we do I have tried many things to no avail told to live with it whish I had answer but I can only offer advice

Sara

Have you attended a check up by the Pain Clinic, to work out your needs

You are going to attend a group session at Pain Clinic ?. In the future. If that is the case

You will have treatments and techniques explained there. The problem is these clinics are very busy, and it may be you will be given instruction in clinic and also further courses in other various departments to help you move on.

You could use a Duel TENS, and try Relaxation Techniques Mindfulness, Books can be purchased on Amazon.

Tens I get mine from BODY CLOCK they are also on the Web. I use a V-TENS, It can be used as an EMS, tones up the muscles as well. A Physio or possibly a nurse will explain its use. If you have a Rhumi they can also arrange ways to use above.

Nerve damage can also be controlled in the taking of various Anti- Depressant medications.

You could also try hot or cold compresses, they can help you relax

BOB

Lolarufus123 profile image
Lolarufus123

Hi Sara sorry you had such a bad experience with that woman. She had no right to speak to you like that. I have also experienced negative experiences like this and it's very upsetting. I hope you get you're appointment with the orthopedic surgeon soon. At least you will know if the break in your sacrum has healed and what's happening with the insufficiency fractures and you're osteoporosis. Take care and try not to think about you're bad experience today. Lola

SARAHHOUSE67 profile image
SARAHHOUSE67 in reply to Lolarufus123

thank you I will let you know seeing a doctor on 29th November.

Lolarufus123 profile image
Lolarufus123 in reply to SARAHHOUSE67

That's great that you can get in before Christmas. I see my specialist on the 11 December. I really hope that things go well for you. Lola

jilly-124 profile image
jilly-124

I have had a stroke and have been left with chronic pain down my right side and if feels like someone is pouring boiling water over me and slashing me with a blade. It is horrific, Also have arthritis at bottom of spine and sciatica on my left side. I am beside myself all day every day. Been on different pain killers to eliminate pain but to no avail and also had injections in my spine that have not worked. I am going to the pain clinic on the 14 December but I think it is at a last resort as far as the medical team are concerned and I think if they treat me like they treated you I will burst.

You take care Sarah. I know its hard. Do you know that one of the only thinks that gives me any relief is going swimming and being in the pool. I relax so much. I am lucky I go with my stroke group but you will probably find that most pools these days have a session a week from disabled people. Even if you just splash around it may give you some solace

Baggs profile image
Baggs in reply to jilly-124

Good advice, just floating in the water gives you some relief it does for me. I was told after having a procedure carried out that that was the only treatment left for me. The only thing open to me was a pain management coarse. I after attending one session struggle with how this could possibly help me. They drew a circle on a white board and drew circles inside one another and started explaining about pain. This went on for half an hour, and then it went to the floor to each person to tell everyone about there experience with there pain. After 45 minutes of this I just couldn't see how this would help me get dressed in the morning. I'm absolutely sure these courses work for some people and I hope your one of them. It's terrible that you have to suffer this pain, l wish they could give us a tablet that could numb the pain just so we can get through the day normally. If I was told without pain killers I would live to 100, and if I took a pain killer that strong it would numb my pain but meant I would shorten my life by 10 years if take the tablet. Unfortunately we don't have that choose but to be told there's nothing more we can do and that you will just have to learn to live with it is outrageous. And that's what these pain clinics are all about to help you mentally try and come to turms with your pain. Just incase you haven't already done so!! Outrageous!! But I wish you well and you never know.

jilly-124 profile image
jilly-124 in reply to Baggs

I have a neurologist this week and pain clinic next. Look forward to what they have to say. I have been so very very lucky that I have got a Stroke Support Group in my area. They have helped me more than they will ever know, even with this awful pain. I am now a Trustee of the Committee of the Stroke Club to try and put their opinions across and also go to my local hospital to the stroke ward to tell them that there is life after strokes but you have to work at it mentally and physically. All said and done you have to work on yourself as well as others. To all of you I wish you luck.

Lolarufus123 profile image
Lolarufus123 in reply to Baggs

Hi Baggs it sounds to me that you are in severe pain most of the time. I agree with you that if we could take a pill and live for 10 years pain free as opposed to living longer with pain I would go for the pill and 10 years any day. I fell in the car park and broke my sacrum 11 months ago. My syumptoms are much like Sara's. Most of my Pa in is nerve pain and theres nothing i can do about it. Unfortunately I can't float or swim so there goes the pool option. I am still amazed that something as simple as a fall can pretty much ruin you're whole life. I wish you all the best and hope you continue feeling better going to the pool. Lola

Baggs profile image
Baggs

I understand,

It's terrible this group pain clinic is not for everyone. I've been and walked out halfway through, I explained that listening to how others cope on a day to day basis doesn't help or do anything for me. I just want to get up in the morning pain free so I can go about my day as I used to. They just don't seem to understand, I believe unless you're experiencing the same kind of debilitating pain you just don't get it. I'm shoveling tablets into myself, simply because no one wants to help! If I was a football player earning millions Im sure I'd have been sent to a place and sorted out with the minimum of effort. Yet people like myself like you, have to sit and suffer in silence. They say the class gap is not the issue but I'm positive if I could pay privately for treatment I'd be up and back to normal. Your correct it is an absolute disgrace!!! Good luck and keep pushing for help!!!

in reply to Baggs

There are some me conditions for which even a footballer could not pay for a cure. Part of any management plan is acceptance and a desire to be open to hear everything. It may be that one of the people you walked out on held the answer to your specific pain - and you walked out. Many chronic conditions will need coping mechanisms as part of the management of ongoing pain. Pains of a complex aetiology are often difficult to just throw pills at.

Baggs profile image
Baggs in reply to

Well your as helpful as the doctor I see. Have you ever heard the saying if you have nothing good to say then say nothing at all. The meetings I went to were full of people who just wanted to hear stories about other people suffering. It wasn't for me and as far as anyone there having the answer wouldn't have been there if they had. Talking is for some people, doing is for others so I'm trying to do what's best for me. You rude ignorant person!

MarsBarKid profile image
MarsBarKid in reply to Baggs

Seems the same unsympathy for pain sufferers extends across UK USA OZ and NZ and likely Canada. All singing from the same left wing page. "All of you lot are just wanting pills to pop and we are going to save you from overdosing" etc it's our duty and meanwhile, makes us feel superior as we punish you for the sins of the few.

How was she rude?

Baggs profile image
Baggs in reply to

It seems to me you are on this site to wind people up! Please leave the site if you have nothing positive to say! And stop trying to make people feel worse than they already do. Horrible person!

in reply to Baggs

I am sorry if everyone cannot always tell you what you want to hear. Nobody is trying to make you feel worse just suggesting a more positive way forward. I say this as a Parkinson’s Disease sufferer and renal cancer survivor who is open to all possible treatments and coping strategies.

Baggs profile image
Baggs in reply to

What works for you doesn't necessarily work for others. When I walked out of the class it was during a break. And I explained to the person who was giving the class that I was getting nothing from it and that I wasn't for me. With that being the case I wasn't about to sit for another hour or more listening to stories that were not going to help me. It's not a case of I don't want to listen to things I don't want to hear. I've tried various treatment and am giving my opinion about what I got from them. When people try to tell me what I should be doing when I know better then it gets my back up. As you did!! I wish you well but please don't respond to me again thanks.

Lolarufus123 profile image
Lolarufus123 in reply to Baggs

I agree with you Baggs. Sitting in a group listening to others talk about their pain isn't going to help me. Physio made me worse, my partner is a psychologist so no need to talk to another one. As for coming off my meds that's so unrealistic. I am only on a 20mcg Bupranorphine patch and Pregabalin. I need these,meds to live. No way am I going to give up my meds for what a psychologist tells me. Lola

Dear all

Apologies if I have upset any of you. Certainly Baggs did not want to hear what I had to say. This forum is, I believe, about an exchange of views to broaden our knowledge about our situations. It is about learning in a positive way from the experiences of others. It is also about support - although that is not always about agreeing with everyone. I know I have been in places where I have needed to be taken outside my comfort zone for my own good particularly when I was diagnosed with renal cell carcinoma. I am every thankful for a supportive partner and friends who kept me positive.

Baggs: I will try to remember not to respond to your posts. Take care.

Baggs profile image
Baggs in reply to

I apologize

I was not having a good day today like all of us we just want to be pain free. If I took your response to be flipent then I am sorry. I hope you are as well as you can be and that you get all the help you need. Please feel free to respond to my experiences and give your opinion it is a free country and I'm sure some people like your direct approach and sometimes that's what some people may need.

I wish you well!

Baggs

jilly-124 profile image
jilly-124 in reply to Baggs

I have read your exchange. We all have different types of pain. What suits one does not suit another. We all have our cross to bear. I think these pages are not to judge but to hear that others may be suffering as you do and this gives solace.

in reply to Baggs

Apologies are not necessary, Baggs. Keep well and get rid of that pain.

I understand, the pain is awful, but, I have found a solution to mine. Do you know of the cooling gel strips you get for migraines? Well I bought them, used surgical tape to keep it in place on my side, and for the past two days I have actually finally got relief! Give them a try, I put one in place in morning and change it at night, depending on how large an area is affected you may need two, but you can buy them in bulk on line. Give it a try.

MarsBarKid profile image
MarsBarKid

OMG I understand - almost exactly same here in Oz. Decided we are all druggies and so limited access to pain meds. I was on what did the trick - bearable without mind gone etc - 8 Panadeine Forte a day and 4 Codeine 30mg tabs a day. Now down to the 4 Codeine as Doc says he can sneak them in. But no more as only 2 a day allowed. Honestly! Done because they says UK USA all suffering from overdoses etc or addiction.

Same old Left wingers punishing the innocent majority for the minorities who aren't even in the system but illegal drugs usually. OK a few idiots on scripts may overdo it but very few I reckon. Pain sharpens the mind rather than dulling it. I wrote down times of the tabs with paracetamol due to more then 400 mg in any 24 hours damages the liver. Current affairs program on it - saw a lady doing the exact same . Proves we're not dummies.

Hope you find a solution.

Cb1963 profile image
Cb1963

Hi there, nerve pain is really difficult to control I suffer from neuropathy and have done so for six years, the problem is that I think the medication doesn't always work and then you'll be thrown from pillar to post, stress aggregates my symptoms, and and it's others who cause those problems sometimes, I live on my own just so my symptoms don't get worse, I did have a long term partner but cause your pains are invisible folk don't want to know, so we parted on mutual terms, so it may sound drastic but it was one less thing to add to this condition, I'm on various medication and I'll be honest I don't even know if it works or not, nerve pain comes in different ways, burning, pins and needles, shooting pains, muscle spasms, you name it the body dishes out everything, so I would definitely not be forced into giving up your medication if that works, I've attended the pain clinics and no joy for me either, it's very tiring and you end up with depression, which is another battle you may have to face, I hope you can get some solace from folk on this forum, and most folk who are in pain understand your frustration, so yes vent your problems off and you'll find folk on here very supportive, good luck in your quest for better results, thanks.

Stillwalkin profile image
Stillwalkin in reply to Cb1963

I sympathize and empathize with you. When you go to a pain doctor you will have to fill out a questionnaire periodically for insurance purposes. A stupid statement will ask if you are only comfortable in your favorite chair. How condecending is that statement? "Oh yeah, you should just prescribe a favorite chair". The pain level is incomprehensible to someone that has never felt it. I don't try to have a relationship because I know how much pain I have and the other person cannot be expected to cope with it.

Sandie120865 profile image
Sandie120865

Hi Sarah totally agree with what you have said, the pain is real and exercise is ok but combined with the correct meds, I can’t exercise when I’m in pain! I have been fobbed off so many times by doctors my health has definitely suffered, I have had mri’s for spinal arthritis but obviously they need to take one on my head as they seem to think I am imagining my pain!

SARAHHOUSE67 profile image
SARAHHOUSE67 in reply to Sandie120865

keep pressure on the doctors are you in the uk keep on them because this what i am doing they have to send me to some one i am fed up just being in pain all the time being up in the night not get any sleep

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