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Had the first Amitriptyline last night, was due to start Monday but I had to take mum to the hospital Tuesday morning so didn’t want to run the risk of unknown side effects when driving.
I’m happy to say so far no side effects which are obvious. There are some signs but they are close to issues I normally have so can’t be put down to the new medication.
Pain relief could be a long time coming but so far, for once, it’s looking hopeful.
Hope it does give you pain relief Nolan. And continues to do so.
I have an unusual date for 3 CT scans, which will hopefully provide me with the right verdict after my problems last year. The unusual part is that it is an appointment for Sunday May 26th: Bank Holiday Sunday. I know I am much better, because I am putting on some of the weight I lost. Thoughts on that:
*You have lost weight due to illness when you have to buy new trousers.
*You are putting the weight back on, when the new trousers become tight. (Sigh!)
*You are still replacing weight loss, when the old trousers do not fall to the floor. (Heavy sigh!)??
When the Thought Police arrive at your door, think -
I'm out.Yes Bob, that kit is expensive and needs to earn its keep, both my wife and I have had similar out of expectation appointments. Let me put it this way the hospital is more like a ghost town early on a Sunday or bank holiday.
@PM, Nolan I think; I have just come back from an interesting appointment with the physio with whom I had a round about discussion. I said that many years ago the surgeon who tried to fix up my knee suggested that I had loose joints and they were more likely to fail than the bones were to break. The physiotherapist checked my hands, (which was why I was there) and said yes you are a prize example of joint hypermobility. When I said about hip joint pain and the sonographer’s report outlining abnormal tissue thickening, she mildly queried the diagnosis as there is soft tissue damage in the joint that can cause the same issue of thickening. I see you have something highly similar. Anyway she suggested I follow up Elers Danlos Syndrome or EDS. You might get a surprise at how many overlaps you have with that condition. Certainly it gave me food for thought when I checked it out. Now I wonder how to get some action, it is an inheritable condition which made a few other pieces drop into place on my life board.
Bob, thanks.
Richard, I’ve looked up EDS as, like you say, many of my symptoms are also relevant to that illness. It’s a tangled web, that’s for sure.
TBH if it wasn’t for waiting for some deliveries tomorrow (all due in the morning so far) I’d be down the gym as early as it opened getting some endorphins flowing. So far for me the best pain killers are naturally produced ones.
Yesterday my missus attended an appointment with a new consultant, to attempt further diagnosis of pain from the hip replacement that was carried out in January last year. 2018 being out own Annus Horribilis, when SWMBO had her new hip and I had the cancer op in April and chemo.
Three previous consultants, including the one who carried out the op, have refused to consider that it was a result of the op. Instead, several different scenarios were proposed, including ‘muscular’, ‘lower back’ and ‘a blood clot’. One by one these were discounted, until we met with this new chap, possibly Portuguese. He asked for a day’s delay before the appointment, so that he could consult all my wife’s notes. When we arrived, he had obviously used that day well, because he stated, after examining her, that it was in his opinion, a result of the operation. He discounted all other causes, listing treatment, tests, scans and ultrasound which proved unequivocally that it was the op. He recorded his decision and recommendations into his Dictaphone.
To say both of us are relieved is an understatement, but I cannot believe it has taken more than 12 months and 4 consultants to get us to this point. It has been growing more and more difficult for my wife to accompany me on our walks. She struggles to rise from sitting and then struggles to walk across the room. There does not appear to have been any consistency from these people and it strikes me that this latest chap was the only one to really read and digest her notes.
Now I have to hope that I stay well when she probably has to go for the op again, because I will have to do everything there is to do in the house again and look after my courageous missus: not a difficult job in itself, but complicated by not doing things the way she would!
I cannot help but contrast the wonderful treatment and help I received during my own problems, with the offhand treatment my wife has received.
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I'm out.Bob, best of luck to you and your wife.
Thankfully no-one is keen for me to have the hip re-facing operation, which is the preferred option so far.
2 pretty big operations in my life so far, mangled knee and smashed ankle-neither are as they should be. My body hates drugs and invasive procedures.
Bob, I am sorry that your wife is having that awful saga. I have known several hip replacement cases, perhaps as many as ten or more. In all cases they have had the pain removed by the replacement having been told by their surgeons that was the objective of the exercise. Though they did say that other pains would not be affected. One person even had a replacement for a previous replacmeent that was broken in a fall. He was warned that it would be a long recovery process, but has been driving walking and improving since very soon after his latest replacement was fitted having made a rapid turn round.
I can only hope that the latest surgeon will be able to do the required repair/replacement to get your wife to the place she should have been before the previous ‘fitter’ did not get the job done correctly.
It is no compensation to you but my wife’s treatment continues with another round of the chemo tablets started this week, this takes things well into the second year. The long wait for the consultant was NOT livened up by seeing a parade of other people we had seen in their early optimistic stage of their treatment. All are now terminal and being treated for metastatic cancer. Perhaps none of the walking wounded needed treatment but a 100% failure rate was not a good result. I know others, Steve’s wife also face long treks through treatment issues and in his case with a young family being impacted. That is a far from pleasant load to carry.
My wife’s consultant spoke of research projects into immunotherapy trials and asked if she would be interested.
After seeing so many whose hopes dashed I wish all who face such issues hope for a breakthrough.
Nolan, the reason that I mentioned EDS was that it came as something of a shock and revelation to me. Having had a range of operations, a knee, followed by an ankle rebuild after an office accident and a month’s stay in hospital while that was sorted, a couple of spinal operations, one to let me walk again and the other to improve my use of my hands and turn my neck once more. It turns right OK but not so far going left when pain stops fun. Six hand operations; four have released fingers that became trapped in one position two were on the carpal tunnels to each hand to release the nerves. I wear compression socks to control leg swelling. Two cataract operations were wonderful for the benefits they delivered. EDS does go a long way towards explaining why I have had some of the problems I have encountered, though the ‘surgical list’ does not cover all aspects, such as stomach and urinary tract, both of which can be related.
On one point I can only agree, pain killers are falsely named and advertised. For me they are useless From paracetamol through the various steps to tramadol they are ineffective on me. Exercise can help, I walk from 3~7 miles on a typical day, though the most recent hand operation followed by a bruising but otherwise consequence free fall slowed things up. Twenty five kilogrammes of dog launched across the small road twisting and unbalancing me. My balance is suspect on a good day, that was not a good day!
Nolan and Richard, thanks for the good wishes.
Supposed ‘pain killers’ have different connotations for myself and my wife. SWMBO cannot take anything stronger than Paracetamol: anything stronger knocks her out. One session with Co-codamol presented me with a zombie wife who had no quality of life and just wanted to sit all day. My missus does not like to lose control and that episode frightened her badly.
I have always had high tolerance to pain and have spoken here before about my resistance to taking drugs that I consider unnecessary. There is enough necessary medication already in my medicine drawer, without additional potions that do nothing effective. My last two hospital stays were caused by infections to a reduced immune system and high temperatures. (At one point, 41ºC: informed later that they were so worried they considered sending for my wife) It was discovered that Paracetamol was the only drug that was effective in bringing down my temperature. I have rarely suffered headaches since an operation during Army service found and dealt with a nasal problem, so I take Paracetamol very rarely.
When the Thought Police arrive at your door, think -
I'm out.When you go up into the 41~42 and upwards range things can get a bit ‘hazy’. My second bout of glandular fever had me reaching those sorts of levels even after IV paracetamol. I was in for ten days with that episode; I only remember odd bits at the start including a blood pressure reading that had the nurse go a funny colour. My memory could be distorted but I recall her gasping that both numbers were under 50, I was told not to move under any circumstances before she ran off. There was also muttering about white blood cells being in short supply for a while, I did meet all sorts of infection control people, though I only found out after I had been discharged what the likely infection had been. My wife still speaks cryptically about my delirium and total lack of awareness during that time. I think she was referring to me, I guess nothing much changes! I can see why they wished to have your wife nearby. With a known chemo impaired immune system, it would be a dangerous situation. You would be prey to any wandering bug de-jour. Sepsis is the bogey-bug of the moment, so any hint of an issue with my wife and we are assured of a minimum six hour hospital visit an IV boast and a bucket load of tablets when she gets released. So far no sky high results for her so no long stays so far: may I recommend you avoid a repeat ‘performance’?
Richard, sepsis was their main concern at the times I was infected. It began in my nose and sinus, made me feel horrible. After I presented myself for the first time at Grimsby, they kept me waiting 4 hours until results came in. Then they saw my records regarding chemo and cancer and I was wafted into a holding ward sharply. I had informed A&E staff about all this, but they are all just so rushed off their feet.
I spent a week in the Amethyst ward, which is solely for cancer patients out of chemo but still with immune system issues and infections. I had been trying to
walkstagger about a little for the first 2 days, then they told me I was supposed to be isolated. No one had told me that, no notices on my door. I was very overheated all the time, but eventually got over it. Then a few weeks later I was back and this was worse: temps up to 41ºC as I say, the little weight I had managed to recover slid away. Some nights I was convulsing and the bed was so wet with sweat I thought I must have had a bladder movement. I was blitzed with drugs until I got fed up with being woken from a rare sleep of more than an hour, to take more pills. Happily this time they gave it some research and found the right combination that saw me out of there. I take your recommendation and can solemnly assure you that I do not require a repeat performance!As I said earlier. I have a triple CT scan next Sunday and am looking forward to what I hope is a good verdict from that. Any other result, will be faced if and when.
Best wishes to you and your wife for a continuously improving outcome.
When the Thought Police arrive at your door, think -
I'm out.Finally made it to the gym for the first time this afternoon. It was deserted. For about 55 minutes of the hour I was there I was the only person in it. That suits me fine.
Managed 35 minutes on an exercise bike, 15 minutes on a hand bike and the other 10 on a machine I don’t know the name of, some kind of rowing type machine where you stay static and your arms and shoulders do the work. All are adjustable resistance or weight.
Knackered now but it’s a good knackered, feels nice to get some proper exercise.
One month into my 6 day a week gym routine. At least an hour a day.
All my muscles are sore but it’s a good sore.
Building some muscle on my shoulders, arms, back and abs where the fibromyalgia affects me the worse.
Still scares the s^^t out of me every time I go but I’m paying so I go. Feel so much better for getting exercise regularly.
Downside is I’m hungry often. I can burn through 600 odd calories in an hour and I can’t physically eat enough to get the protein I need so shakes are needed. Got some high protein powder from Argos for £10 a bag,usually £25 odd , either someone messed up badly or they didn’t care.
Glad you’re doing better and getting fitter Nolan, building muscle is the right way to protect bone and ligaments when you have osteo and/or rheumatoid problems. That’s what I was told some years ago, just wish I could repeat the exercise I could carry out when I was younger, especially weight training (not weight lifting) and running.
I can’t remember the name of the stuff they gave me after my cancer battle reduced my weight so much. It was like a very thick beige milkshake and I had to down a litre a day. Initially the taste was fine, but the more I drank, the less I liked it. It did put some weight back on, but it wasn’t until my appetite came back, (with a vengeance!) well after chemo that I really replaced what I had lost. When I felt fit again, I was off walking 2 or 3 times a day, from ‘around the block’ to 3 or 4 miles along the beach or the Coast Path. Takes me ages to get anywhere, but I get there. Well, if I can’t run…
All the best with your efforts mate!
When the Thought Police arrive at your door, think -
I'm out.Thanks Bob.
Used some new machines today and I’m in agony but I know that’s because the muscles/joints haven’t been used in that way for a very long time. Just waiting for my left shoulder to decide when it wants to pop back in 100%. It works fine, just feels a little weak and odd.
The right shoulder clicks/pops and gets out of kilter a lot but goes back in easier so overall is less of an issue, when the left one plays up it’s a proper pain.
Been to the Doc today as my hands have been agony for about a week. Probable cause is an arthritis flare up.
Never had pain on the palm side of my fingers before so I was unsure of what it was, also never had very sensitive spots.
Load of steroids, anti-inflammatory stuff (despite the fact my weekly injection of methotrexate supposedly makes inflammation impossible 🤔) and double up my stomach meds, all for a week. Doc has promised a call to see if things improve or not next Wednesday.
Could be the weather Nolan:
Although, as usual, medical scientists cannot agree on anything, there is evidence that the drop in barometric pressure before rain begins, has an influence:
All I know is the evidence of my own body, since the weather became colder and extremely wet. Hands, fingers, toes all aching – that’s the Rheumatoid. Shoulders, spine, neck all painful – that’s the osteo. The fun has been joined over the last couple of years by leg muscle and foot cramps, which can be agonising at times. I have had the pain in the palm side of my fingers for about as long as the leg and foot cramps. It’s the same thing: muscle cramp in the big hand muscle from the heel of the palm, to the pinkie finger.
My grandfather always said that the British created the biggest Empire ever known, as a result of looking for somewhere warmer and drier to live. If my Euro numbers ever come up, I will live in Andalusia most of the winter.
When the Thought Police arrive at your door, think -
I'm out.It could be the weather Bob.
One of the first questions asked by the Doc was if it coincided with the change in the weather. That was a negative.
I’ve never had more/less pain depending on weather, it’s pretty much the same apart from random flare ups.
I hate being hot, slightly warm is fine-anything more than that winds me up. I don’t mind the current temperature, about 5 Celsius ATM. I can always put more clothes on, can only take a certain amount off!
I used to be OK in temperature extremes Nolan. Didn’t mind the Arctic during Army service in Norway, and earlier at 16 as a Junior deckhand I was making 10 day runs between Hull, Sweden and Norway. In December, January and February. I got used to Aden and Borneo/Malaysia, but nowadays I can’t stand the cold and anything over about 28ºc has me reaching for the big-brimmed cowboy hat the kids bought me. (“There you go dad, you get the horse for Christmas!”) I don’t know what they were trying to say… But I never get sunburned.
I just know when it’s cold and wet, my Arthur is worse. Just cold or just wet, is OK, only ‘normal’ lower pain. Reminds me of a former GP some years ago, discussing my gallstone pain: “On a scale of 1 to 10, how painful would you say it is?”   ME: “43!”
When the Thought Police arrive at your door, think -
I'm out.Had my telephone appointment on Wednesday, things have got worse not better. The steroids did nothing at all.
The pain has spread over my fingers and the swelling is still there. Doc gave me some co-codamol and recommended coming back in to surgery as the rheumatology nurses ‘helpline’ was an answerphone saying ‘see your GP’. 🙄
Co-codamol does nothing so saw the practice owner GP today and I now have morphine sulfate to start with tomorrow. He’s also going to get in touch with rheumatology on my behalf as he’s miffed at them, to put it mildly.
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