Confused and Despairing

[CecilyParsley]

Hi everyone. I really hope that your own pain is eased currently. I am despairing after seeing at long last an NHS Pain Management Consultant today.

Background Info, apologies for the lengthy post.

I have several sources of pain from Bechets , query Lupus, Osteoarthritis, Musculsr Skeletal, pelvic and new new source which is causing me to scream. I do nit know the cause, two GP`s have refused to examine me, my Rheumatologist is nit responding in spite of six calls to the helpline and four emails to him from the Rheumatology Specialist Nurse. I am struggling to weight bare, bend or stretch my left leg since my nasal surgery and the severity of the pain is stopping me sleeping and I am having to literally drag my leg. I self referred to the Musculsr Skeletal Team and they refused to touch me in case I had a blood clot. I arranged for a Doppler,er scan with my podiatrist and although she found adequate blood flow to my ankle and femoral artery the painful leg had a weaker flow so she has asked my GP to organise vascular screening. I will not hold my breath.

I had been seeing a private Anaesthetic Consultant of repute who had tried several drugs for my pelvic pain which she diagnosed as PN. She was hoping to get my pain under control so that Sge could then do the nerve blockers.Unfortunately I ran out of money and then after a whole year the NHS pain clinic appointment arrived.

So today I thought at last I would get relief from some of my pain coukd be dealt with. The Consultant however had other ideas. Sge told ne because I had the hot poker pain at night it was not PN or Vulvodynia and therefore she could not treat it . She has referred me to a psychologist. To my horror I started to cry silently as she was talking and I coukd nit stop. She totally dismissed the private doctors diagnosis and claims she has national and international acclaim and is more highly qualified. She point blank refused any pain medication despite seeing that I was struggling to stand up and in agony. she examined my vagina on a bed without a screen or blanket. I felt exposed and embarresed. My friend had to take my incontinence pad off me as I was unable to bend my leg to retrieve it. She told me I would need a seperate referral for each type of pain so one for my Osteoarthritis, one for the muscular skeletal pain, one for my Betchers pain, one for my back pain, one for my foot pain, one for my neuropathic pain.

I waited six years for a Doctor to diagnose the red hot poker in my vagina pain and in an hour today it was taken away along with any hope of help.

Had anyone here experienced PN at night please?

Thank you if you got this far

[marybeex4]

Like you I wasn't listened to either. I had a trapped pudendal nerve and a broken coccyx after a routine hysterectomy and prolapse op. It took two years before they found the coccyx had been broken even though I had been scanned. Apparently new computer softwear found the break, two years after the scan? Anyway, I just wanted you to know that I am thinking of you.

14 years later, I still have extreme pain at times. Its always with me as regular chronic pain but I have times when I go to bed fine and wake in the night in agony. This theory that any pain I have is remembered pain and my brain playing tricks just doesn't sit right with me despite attending lectures, talks and endless discussions I don't understand why it can suddenly occur big time in the night when I am happily fast asleep.

What I have found is that doctors expect you to explain very clearly and calmly and use the right words. I now write things down beforehand, I also keep records of all visits so that I can discuss dates and if you have friend or partner with you then it would help when any despair sets in.

The very worst discussions were with a psychologist. She was adamant and still is, that the pain is only brain related. I know mine isn't totally controlled this way, as twice I have shown her that there were problems ( broken pieces of bone and then trapped nerves) but I cant get past her diagnosis any further because apparently she knows better?

I do wish you well, don't give up or despair too much. Answers must be available somewhere and it is a matter of finding out as much as you can so that you can explain better. I missed about 6yrs of being able to sit down..... because it was apparently all in my head???. Once i had the broken coccyx removed, I could at least sit down! So slowly but surely, I have improved some things but not all the deep grinding pain.

I wish you well on your journey but just don't give up!

[CecilyParsley in reply to marybeex4]

Thank yiu so much for responding to me. Yesterday was such a bad day. I rarely cry but my leg became stiff after having my cavernous haemangiona removed and the haemorrhage that followed led to blood transfusion and drips and a four day stay in critical care.. I initially thought I had pulled it getting out if bed but as it got stiffer, my feet swelled and my husband and friend have to literally wrench it into and out of the car as it will nit bend and when it bends will nit straighten. It makes me scream. I had my op under local anaesthetic. Two and a half hours of bleeding profusely whilst having the bone shaved and bits removed with a claw like grabber. All the junior doctors cane to watch and without exception they all said you are so brave I would not have done it.I didn’t scream then, I didn’t cry. I am not a baby and yet apparently this hot poker sensation is in my head?

Like you I shattered my coccyx but mine was falling down the stairs. I had gynae operations from the age of 13 up until I had my hysterectomy at 39. Since then I have had increasing urinary incontinence. I have repeatedly queried whether nerves were damaged during the 16 gynae ops where my womb, bladder, bowel were continually unstuck from my pelvis. The idea is pooh poohed but not investigated other than an internal and Hiw can they see nerve endings that way?

I do take someone with me always as I struggle to dress and undress with my spasticity in my hands. My friend was with me yesterday and was in years with me but very much more angry than I was. I also go prepared. I had all my letters from the private Gynaecologist and the private Consultant Anaesthetist stating that I had PN and compression of the genital nerve. I also took a chronology of my diagnoses ie Lupus, Betchets, Raynauds, Oernicious Anaemia, Underactive Thyroid, Hylertension, Bladder Diverticulum, Hemiplegic Migraine, Spleenamegaly etc and a page long list of everything I have done to help myself and distract from the pain. I do not know what else a psychologist can do but I will go and met her come to that conclusion herself.

Yesterday I was devastated that any health professional specialising in ongoing chronic pain could dispassionately let me limp away shrugging that there was nothing she could do for my other pain . The nurse there was so worried about me as I limped out tears streaming down my face. She asked are you ok? Is there something I can do for you? I said no but I sincerely appreciate your kindness. I went to the loo and sobbed and Sge went and asked my friend what happened. My friend was by then in tears and told her. Her advice was to make a complaint.

When I have finally got a medical person to look at and diagnose my keg and provide effective pain relief fir that I fully intend to make a final complaint, nit just about the pain service but about the sheer indifference and negligent care from my GP`s, my Rheumatologist, the MSK Service and the pain service.

We have wonderful Doctors, Nurses, Radiographers, Physio`s and Ot`s in the NHS but these others are not fit to work with vulnerable people. I am making the effort to see a GP I have sone faith in this afternoon. I am praying that she will look at my leg and help me. I have also booked a Chiropractors appointment for Friday as my stiff leg has now affected my back, my hips and my shoulder .

I am so very sorry that you are suffering so much too. It is very kind of you to support me despite this and I am very grateful. It is a help when you know that you are not alone, although you would not wish this on another living soul. I sincerely hope that you finally get someone to listen to you Mary xx

[Twin4Life]

Have you considered going to A and E for your leg pain? It sounds very serious. I am concerned because you said you have Bechets that you may have had a stroke. I would also be concerned about possible spinal compression in your lumbar spine due to the osteoarthritis. I am not trying to cause you any panic, but your symptoms do sound very serious, and I really think you should go to A and E, and bring a friend or family member with you to help advocate for you.

I am very sorry you have been treated so poorly by so many doctors. It is appalling. All I can say, is keep fighting. It is the only way to get help in the NHS.

[CecilyParsley]

Thank you for responding. I have no signs of stroke but I was worried about blood clots due to the APS antibodies especially when the MSK Team refused to work with me. The Doppler I paid for with my podiatrist reassured me. I wonder to be honest whether my kneecap has collapsed as it is loose on one side and the stiffness is Muscular trying to protect the joint. It could be tendons as it is so tight I am struggling to flex it in any way.

I have an appointment with a GP I actually found helpful this afternoon after my husband rang the surgery and complained l It will be the first time since February that a medical person has actually looked at me. I think if this pain was helped I will cope better with all the other pain. If she sends he to A&E so be it. The last time I was there for 12 1/2 hours without morphine and by the tine I was seen by a Doctor is such agony that they gave me morphine plus codeine and treated me very quickly. I am told it is a 16-24 hour wait now which is why I haven’t gone xx