Diagnosed at 7 - treated but still some oddness
Posted , 3 users are following.
Hi,
I feel a bit guilty when I know how bad Scheuermann's can get. I was diagnosed aged 7 and the only treatment were orthopedic shoes. I still occasionally wake with that sharp pain that takes your breath away but it loosens up in 1-2 hours.
My issues are that, although married, my wife sleeps in a seperate bed because I have to turn around every 20 minutes (so no sleep for her) but if I remain lying (on back or side), after 8 hours, I'm in pain. I sleep a lot due to the medication I'm given for PTSD & Bipolar disorder. Are the 2 issues common to anyone else? I was recently in a car accident and the morning pain is back; not every day, but a lot. AFAIK my doctor just said I have to live with the pain.
Lastly, has anyone else discovered that doctors can't perform a lumbar puncture? on 6 occasions it's been tried, all ended in failure. Because of a leg injury, spinal block has been offered but a)it's not without risk & b)I don't know if it's even posssible.
Sorry to ask so much. I hold a PhD in medicinal Chemistry so if you ever need to ask about a med, you are always welcome.
With thanks,
Sean
0 likes, 12 replies
chris00938 sean44903
Posted
sean44903 chris00938
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Can you answer any of the other issues (or should I seperate them into seperate questions?
Once again, if you have a circle of friends on here - just let them know I understand meds better than ANY doctor or specialist - I don't want to just waste 7 years of uni.... at least I'm old enough to have got them partly funded with a grant (remember those!).
My best wishes to you and everyone you care for,
Sean
chris00938 sean44903
Posted
Lawyer sean44903
Posted
i believe that now all you can do is manage it. Consult GP about suitable pain relief: I find Bu-Trans 20mcg 7 day patches good as they are slow consistent release. Also guided physiotherapy can help to strengthen the back - not a direct cure but it helps. Ask GP to refer you to physio at hospital. They will set out a half hour routine for you.
i do not know but suggest PTSD and Bi-Polar are separate matters.
sean44903 Lawyer
Posted
As I say, their only suggestion was to put an injection into my spine to stop the nerves sending pain signals but as 6 attempts (on seperate occasions) all failed, I'm pretty certain they can't, but it won't stop them trying, hurting me more, costing the NHS a lot of money and basically bein a waste of time.
I have asked about buprenorphine for pain (I also have a total right-hip replacement due to an explosion) but patches would be no good - it's just the first 90 minutes of the day.
Buprenorphine also has affinity to the ORL1 receptor, hence it is the only opiate that is good for neuropathic pain. Sublingual pills would be the only useful thing.
Many thanks for your input, it means a lot to me.
As I said, I hold a PhD in medicinal chemistry so if you or anyone else wants input on a med, I WILL know better than the doctor or specialist.... and I'm happy to write a letter with my credentials and tell the doctor in cases where they are just doing a sh*t job. I feel it's the least I can do.
My very best wishes to you and yours,
Sean
chris00938 sean44903
Posted
Very best wishes to you too! I do hope you can get some answers on here.
Chris
sean44903 chris00938
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The pain from shingles (an often misunderstood disease) can be just awful. I know in the US (but not UK), buprenorphine is the first-line pain medication; a rare case when an opioid is first-line. There ARE newer antivirals that DO work, but I don't know if NICE have licenced them. famciclovir and valaciclovir will both help with shingles at ANY stage... but given the choice, the former looks less likely to interact with other meds.
I feel that life has not so much passed you a sh*tty stick, but rather a sticky sh*t ;-)
If you want me to outline a letter, I'm happy to message you with a letter for your GP
chris00938 sean44903
Posted
I think I got away fairly lightly with shingles. It was bad at times but not as bad as I think it can be and I'm getting the shingles vaccination in a month or two (allowing that time as I had it at Easter, so didn't want my immunity to be too high from having it).
Seriously, I count myself lucky. I have various ailments, but who doesn't and I have a wonderful husband who helps me in every way he can, and I have a good quality of life. One of these days I'll consider sending the letter I started to the GP practice, but there doesn't seem a lot of point at the moment because there is nowhere any better around LOL!
I do hope you can get some help though. It's quite a complex issue and I wish I could offer ideas!
sean44903 chris00938
Posted
I think your husband is the MOST important factor to your recovery. I don't know him, I've only just read mention of him but if he's stuck with you through this - he is a REAL gentleman. Thay don't seem to produce many in this modern age but, even on crutches, I will give up my seat on the bus to a lady - I was brought up that way. I think that the 'women are equal to men' story is rubbish - women are just better than men. Think, (cis) ladies have XX chromasomes while men have XY - that's 12.5% of DNA missing.... and it makes itself apparent SO OFTEN. Your husband sounds like a true philogynist - nice to know there are at least two of us. PM me with your meds if you have an issue and want data to smackdown those GPs who exert power-distance (and ladies suffer this more. Invent me as a relative and I can write & reference a letter). My own GP just asks me what medication I would prescribe.... but he's a one off ;-)
My best wishes to you and to everyone you care for,
Sean
chris00938 sean44903
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Oh LOL! Thank you for the lovely comments about my husband. Yes, he's a gem:-))) Nice to know you are too LOL!
Take care:-)
Chris
sean44903 chris00938
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Chris - If it were up to me, ALL cancer patients would get at least 6-month tests and for some cancers, monthly. As I said, your only luck is that your cancer has just about the highest survival-rate of all cancers but the treatment is.... well, butchery. A friend who had a similer Op said she was pleased that she had lost weight - jokingly. Now you have to look for brittle bones and suchlike.
You don't moan, you don't complain, you get on with it - I have the deepest respect for that.
My best wishes to you and everyone you care for,
Sean
chris00938 sean44903
Posted