As there have been no recent posts on this I'm raising it again. PMR 3 years. I'm on 3.5 prednisolone, reducing currently to 3mg. For years before PMR I had fluid retention just in my left leg, but for ages since PMR I have it in both legs and feet, all the way up the legs, and have had fluid on my lungs in the past. I know when it's there. I'm asthmatic but it's a different shortage of breath, first diagnosed after an x-ray.
My local medical centre called me in for a routine BP test, and the nurse suggested I made an appontment with a GP which I have in a few days. I'm now taking furesomide, sleeping with my feet raised in bed, drinking water, not drinking tea or coffee. Have cut out sweet things, except for jam, and I don't each much of that, and cut out alcohol, and processed cold meats. I'm trying to exercise. It's a catch 22 situation: I know I must get more exercise but I feel so heavy and it's hard work, (just over 20 stones when dressed and with shoes on). That's the heaviest I've ever been. 6' 7" tall, normally about 18 stones, but before PMR have been down to 16 stones, but normally 18 stones. Aged 71, normally active, but fluid retention has slowed me down. Go down stairs one at a time, or backwards. Have to press down to get up from sitting or out of bed. Knees hurt if moved more than 90 degrees. Apart from going to the doctor, can anyone give me hope that things will get better?
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Thomas45
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Have they ruled out heart failure? With fluid in your lungs and legs which is helped by frusemide then that should be one of the rule outs. Have you ever had an echo cardiogram?
It's early days, as I haven't yet seen a doctor, though will at an appointment in the next few day. I've had 3 echocardiograms, 2 in the last 4 years, one about 12 years ago. I have paroxysmal atrial fibrillation, but the medicine works and I cannot remember the last time I had an episode. There's never been anything physically wrong with my heart.
I'm rarely aware of having an episode - and it can progress to lead to heart failure so you do need to be monitored. Worth asking the doctor for a few tests - a blood test called BNP (B-type natriuretic peptide) is quite specific for heart failure and is very quick and easy to do for example.
I don't really have a problem with fluid now that I'm down to 3mg Pred., Before that I did have puffy wrists. I have been told that celery seed is good for fluid retention. I bought some and was surprised how pleasent it is. I sprinkle it in on veggies, eggs etc.
Thomas45- It almost sounds like you could do with seeing a Nutritionist re finding healthier food for you to assist with some weight loss - processed meats contain high amounts of salts/additives i.e. nitrates + and they would not be helping your cause.
Whilst I too am mildly asthmatic (slowly returning in my adult years as I taper steroid ) I am determined to keep my weight down as it will be better long term with my breathing, although the steroid reduction has created intermittent breathlessness which we are still working on with various "Specialists" to learn why this is happening.
My heart now has revealed mildly leaking valves and enlarged ventricle so know it is not quite functioning 100% as before PMR diagnosis 18+ months ago. Diagnosed with myocarditis 3 months ago spending time in hospital.
Importantly need to mention had terrible swelling of ankles and feet when in Brisbane 5 months ago - could barely walk, the heat was incredibly draining on all fronts - in hind sight this may have been hearted related.
Thanks, Megams. Regarding cold sliced meat I eat very little. I am from the "waste not, want not" generation so if my godson, who lives with me and insists on eating sliced cold meat, leaves some that he won't eat up, I have the tendancy to eat it up. I must get out of that habit.
As for my diet, I hardly ever eat beef and pork, and never eat lamb. I eat fish, nuts, vegetables and fruit and dark chocolate for inflammation (or rather to get rid of it). I don't drink enough water and I don't exercise enough.
I've had fluid retention in one leg for donkey's years, in the other for only the last 4 years (PMR for 3 years).
The doctor was very thorough, and sent ne to the nurse for urgent bloods (5 phials, results will be known tomorrow hopefully), including BNP.
I'm breathing much better than i was yesterday. I took 40mg water tablet at midnight and stayed awake until about 6.30am, when I managed just under 2 hours sleep.
Have you tried manual lymph drainage? I had badly swollen lower legs 4 years ago after my atrial fibrillation was identified - one session on the worst leg resulted in a magical reduction in the oedema! I would have gone back but didn't need to.
I assume you have had a chest x-ray now to rule out any other nasties?
Hi Thomas45 - can certainly understand "waste not want not" - my late parents often said "think of the starving children in Africa" when we left food on our plate - I feed it to the birds now so wasted, a win win situation.
As this PMR seems to create a vast range of challenging issues, the philosophy I've adopted is to stick to dietary and exercise regime knowing that this will help me in the long run to help my health.
Psychologically this is tremendously important to me & whilst some days when not so well, I use my rebounder/lymphasizer (this helps with retain fluid) & exercycle set up in my family room to at least keep some exercise going.
Just an update. There doesn't appear anything wrong with the bloods. Because of another matter, which may be related to why I'm short of breath, my doctor has made an appointment for me at outpatients colorectal clinic at a local hospital. I'm seeing the GP again in a week. I will hopefully remember to discuss whether it's approporiate to try manual lymph drainage. There is a practitioner about 4 miles away from me. We have unusually hot whether in the UK. I wish it would go, preferably without thunderstorms.
Another update. Saw a colorectal consultant yesterday. In addition to shortness of breath, which is much better - suspect it was fluid on my lungs, I've had rectal bleeding recently. My GP referred me to the consultant with a view to having a colonoscopy. He questioned me about the blood and occurrences and is now arranging a CT scan. He warned me it might set off my AF. Seeing a GP again tomorrow. People moan in my village about not being able to get doctor's appointments, and the service they give. For on the day appointments you have to telephone them in the first 90 minutes of their day. You hear a recorded message that says the average waiting time is 13 minutes. Within 2 minutes of phoning I was speaking to a receptionist, and 2 minutes later a doctor. I was at the doctors within 90 minutes and she examined be for 25 minutes.
Saw a doctor today. All my bloods were okay, apart from BNP which was just over the lower threshold at 103, so I'm having an echocardiagram soon at a nearby medical centre. I last had one 2 years ago.
I had my CT scan 3 days ago. Was a little uncomfortable due to wearing 2 hospital gowns, one with an opening at the back, the other at the front. Whenever I moved into postion on the 'table' of the scanner I managed to trap the gowns. preventing me from moving easily - the trouble with being 6' 7" tall and heavy. I had a tube put in my rectum and carbon dioxide was blown through my intestines to my stomach to inflate them. In addition a canula was put in the joint at the opposite side of the elbow, rather than the usual position of the back of my hand. In the event the canula was not needed because they decided not to inject dye into my veins as I'm being investigated for heart failure. I now have the appointment for the echocardiogram, a week on Monday. The CT scan was primarily to see my stomach, bowels and rectum, but they also did my chest.
A further update. Had echocardiogram today. Nurse said didn't look any different from 2 years ago. Had another blood test a couple of days ago, told to do with kidney function. Having a sigmoidoscope done on Sunday. Not worried about it, but am apprehensive about being without Warfarin for 5 days before it.
You should be given heparin injections to cover you for some of the days before - you also have to stop that for the day of the procedure but then start the heparin jabs until the INR is back to where it should be. It isn't really heparin - but I can never remember what it's called these days...
A further comment. Had a sigmoidoscopy today (Sunday), and removal of a polyp from the sigmoid colon. Because of the procedure I didn't take my water tablet, and so have bad fluid retention in both legs and feet. The hospital is about 2.7 miles from my home. There were 3 possible ways of getting there - by taxi, by bus for about 2.2 miles and then walking half a mile, or by bus for 4 miles, and changing buses to go a further 3 miles to stop outside the hospital. I chose the 2nd option and found the half-mile walk difficult as it's half a mile uphill. I had to stop 3 times, and it took about 20 minutes. I had a taxi back home. My PMR itself is fine. I'm now down to 3mg, and will I'll start dropping again in about a week or so.
I'm eating a lighter diet, but may have a drop of wine tomorrow, for the first time for 6 weeks.
A further update. Saw a cardiac nurse today. The polyp has been analysed and was found to be benign. My heart is functioning properly. Both the ECG and the Echo showed everything was okay. All the blood tests show me to be normal. BP today was 119/58. knees ache most of the time and I have fluid retention still - seeing a GP in 2-3 weeks, once I've taken a month's course of furesomide at 40mg a day.
I wish I had a working magic wand and wave it and rid all our troubles at once but unfortunately that can't be done,so we got to take the hard route.I am over weight and rising ,last weigh in was 32 stone ,with fluid in both legs and recently has excessive breathing problems in which I had a spell in hospital and needing oxygen.My neck is swelled so very soon I have a scan appointment to see if its something to do with my goiter gland ,and is it blocking my air waves,or is it fluid in the lungs.
I was also diagnosed with sleep apnea to which I now wear a mas going to bed which pumps clean air ,which I find easier to breathe when I am using it.So I am like you I too am on furosemide tablets for the fluid ,I dont over eat ,I dont take caffine drinks,havent had alcohol in months but still the weight piles on ,I am not able to exercise because of arthritis on the knees.So you ask for hope thst things will get better? Well ,I got your answer ,things can always get better ,I will keep at it and eventually we will get there ,we cant throw in the towel and say that's it ,it doesn't work like that,every ilness you got to be a fighter ,and hang in there,It wont be today or it wont be tomorrow but I am not giving up hope that one day I will be thin again ,that I will breathe the good fresh air out doors or that I will walk without compression garments on both my legs,have faith ,things will get better,work at it and dont give up.
Hi Galtyboi, Thanks for your words of encouragement. I've seen your posts on Lymphoedema. I didn't take all the furesimode. My GP referred me to a lymphoedema clinic and I now have my first pair of compression socks. Difficult to get on , felt tight at first but now forget I have them on. My right leg already shows improvement. I have had fluid on my lungs before, so am keeping the unused furesomide just in case I need them
I'm not giving up either. I do get out. I frove to the pharmacy. I should have walked it but it's quite cold out today.
Thanks. I have a wonderful Dutch invention provided by the Lymphoedema clinic. It's called 'easy slide'. It's a sort of large ankle sock, made of very slippery material which you put on your foot, and the compression sock slides over it. Then a bit of tugging, (recommended to have 'rubber' kichen gloves on but I haven't bought any yet.) Then get the ankle in place and withdraw the slippery sock. Taking off is like a normal sock but because it's tight doing a bit and then resting, and doing a bit more until it's off
My husband found some amazing gloves in our supermarket which are fabric with "rubber" bits on the fingers - he has full length stockings so it is even worse! I dread ever having to wear such things - flight socks are bad enough when you have PMR!
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