I promise not to write a book!I had a horrendous day yesterday. My husband drove me to the Opticians yesterday because I can't drive any more. I was there for an hour and was in agony. When we got home I had to lie down because the pain was out of control and then my leg's started with a thousand hot needles digging in...no exaggeration! They wouldn't stop jerking and I had to take some Oramorph and an hour later a Buprenorphine. This has been the worst bout yet and I'm finding that I wake up through the night with my leg's feeling strange and have to get up and go to the bathroom 3 or 4 times and my leg's calm down. This is affecting my bladder and I'm exhausted. Has that happened to anybody else? I rang my Surgery today but couldn't speak to my new Dr. . I told the Secretary that I am much worse and would she let him know . I had seen him on Monday and he said that he would find out how long the MRI waiting list is and whether it is the 18 months that he thinks it is ! I asked him to see if I could get a private appointment with a Neurologist ASAP. He said that he would. When I rang today the Secretary said that it's down for him to do that but he hasn't done it yet. I know he's busy but I'm absolutely desperate and it's Wednesday. I'm wondering whether to contact the Neurologist Secretary myself. Is it O.K. to do that ? I am in Scotland. This all started almost 3 years ago when I first felt the big bony lump on my back but nothing was done. I am so worried that I'm getting weaker and yet I used to walk miles and do so much. I know I'm not as bad as some of you and I, honestly, feel that you are all amazing but I just get so frustrated with waiting for help because to let someone get progressively worse is heartless to me !
Thank you for 'listening ' ...again! Thinking of you all and sending very best wishes to you all.
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Danni54
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How frustrating for you! Not to mention the pain. I would phone anyone and everyone 'he who shouts loudest gets served first!' Good luck. Meanwhile have you seen an osteopath who could at least relieve some pain/ spasms/ advise? Kept me going for years, plus if your meds aren't enough demand something else, worth a try? 🤞
Hi. Thanks for that. I have to phone the Surgery tomorrow morning at 8.30 a.m. to make an appointment to speak to my new Dr. because he is the Duty Dr. tomorrow. I will growl...again! I never used to be a grumpy person until the cancer misdiagnosis! I , actually, never thought of seeing an Osteopath because of the Osteoporosis. I know that I have that in the Pelvic bones,hip's and elsewhere but I must phone the ROS Nurses tomorrow and get some advice from them. My brain goes walkabout! I'm scared to change meds because the Buprenorphine does, mostly, stop my leg's from kicking though not on a really bad day. I just hope that there is a good Neurologist at our hospital who can help me. I'm sceptical! Take care. Hope you aren't having too bad a time.
You have Restless Legs Syndrome (RLS). I (Marlene) take Sifrol 3 hours before going to bed at night and I have no further trouble. Your doctor should know that.
Whenever I wake during the night and on waking in the morning my husband has to get me off the bed immediately as it is unbearable to lie there. My whole lower body and legs have this terrible terrible feeling that I just can’t put into words it is impossible to describe. My husband has to help me do steps around the bed until it passes.
Regarding seeing a neurologist call the secretary and ask if he sees patients privately, if he does you would then call the clinic where he sees private patients and make your appointment simple as that. ( sometimes the clinics are in the hospital grounds) and you can choose your day and time to suit yourself!!!
If you have never been to see a specialist privately I can tell you hand on heart it is well worth paying for. I know it should not be the case but it is a completely all round better experience.
At the end of your consultation if the consultant feels any tests or scans should be done you will be asked if you want to have those done privately or if you want to have them on the NHS . From my own experience if the consultant feels that there is an urgent need to have them done then you would not be waiting very long at all.
One other thing I have wondered if you have had any form of counselling because after such an appalling experience surrounding your cancer diagnosis it may help you.
Wishing you all the best with moving forward and hope it happens quickly. Xx
Hi again. I completely understand what you are saying about your leg's. It's so amazing to speak to somebody who knows, exactly, how it feels. The RLS Forum people also understand but you have described it so well. My husband doesn't really understand and I think he is suffering from ' compassion fatigue ' so I try to push myself but it's hard. Buprenorphine definitely helps but my fracture pain and my leg's are getting worse. Awake this morning at 3.30 with my leg's kicking, took ½ Buprenorphine but that didn't help so I had to take the other half and that helped but only for a while. I'm up 3 or 4 times during the night now , going to the bathroom and my leg's kicking. Anyway, my new Dr. messaged me to let me know that he has emailed Neurology and has asked for an urgent appointment. If I don't hear anything by Monday then I will phone to ask for a private appointment. I'm just exhausted and the pain is indescribable!
As for counselling for the cancer fiasco....I saw a Physio from our Pain Clinic who confirmed that they had ignored the tumour for 15 months and because I broke down and got angry they have, in their wisdom (!) decided that I have PTSD which was then confirmed by the Pain Clinic Nurse who , also, confirmed that they had ignored my tumour! Why did they think that that confirmation, 6 years on, wouldn't upset me. I am due to see the Psychiatric Nurse on Monday at our Surgery because I have refused to go back to the Pain Clinic! I was never offered help , advice or support after the Lobectomy and have never had an apology despite saying that I wouldn't sue hem. I just want them to change their " policy " of not looking at 2 thing's at1 appointment! They were checking an area below my rib's to put an injection there for pain but the tumour ( Adenocarcinoma) was in the top lobe so they left that because it was small and then forgot to tell anybody!! The pain under my rib's was referred pain from the tumour so the injection did nothing. If I hadn't had Pneumonia 15 months later then I wouldn't be here now! That w2as when I was shown the original Xray from the Pain Clinic!
Long story....sorry! I wish I had that magic wand so that I could help all of us. Have you tried an Opioid for your leg's. The RLS Forum put me onto Buprenorphine which is the only thing that helps to a degree. Thinking of you and I so hope that you will get help soon and some relief. Please take care. All the very best wishes. xx
Danni, I am so sorry to learn of your desperate situation and would strongly recommend that you make a private appointment with a Neurologist/Rheumatologist. If your finances allow just find one on line in your area and call their secretary and make an appointment If you check who the Consultant is that is Head of the NHS Neurology you can be sure that he/she will also have a private practice. Good luck!
Hi. Thank you so much for the sympathy, support and advice. I'm so sorry to read what you have been and still are going through. I'm on my own a lot so I can understand how scared you get and I know how horrible this all is. I wish that I could help you and give you a, gentle (!) hug! I have asked my new Dr. about going privately and he is going to find out for me. We had to have a private Consultation with a wonderful Gynaecologist when I had Endometriosis....many year's ago so I will do it again. I hate the thought of queue jumping but I'm desperate. However, my Dr. just messaged me back to say that he has emailed the Neurology Department to make an urgent appointment for me. It's 8 weeks minimum for an ordinary appointment so , hopefully, an urgent appointment will be quicker ! Last night was awful..again and the pain is so exhausting isn't it. Only people going through this really understand don't they? Please take care and I'm here for you too.
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