Hi all, reading about the fat, tat, everywhere. I have been on the PMR journey over 2 years. Up and downs on pred due to GCA, also. I am down to 2.5 mg pred daily, plus methrotrexate 2.5 mg, 3 a week. Along this journey, I developed a colo/rectal fistula. Surgery for that resulted in removal of 9-11 inches of colon/bowel. Due to this my diet is very strict as to fiber! YIKES Also, due to fractured pelvis, and degenerative lumbar, my once very active lifestyle came to a quick halt. I read about the No Carbs. I have done the no flour/no sugar in the past, AND IT WORKS. But, there were all the salads and raw veggies, that I could eat. Now, Not! No nuts, seeds, raw fruits, except banana, which Dr. says must eat for potassium. I seem to be stymied. I gained almost 20 lbs. I have always been weight consious and belong to a weight loss club. Cannot exercise, due to back, live in country, cannot drive to pools, etc. I get frustrated, but for months I couldn't walk, had to crawl up stairs, couldn't lift myself out of bed, or out of a chair....on and on. So, for all the good, things now, I am thankful. This forum was a lifesaver for me thru all this, with all the sharing. Made me not feel alone on this horrid journey.
Gosh you have been through it one way or another, and yes this is a lifesaver for sharing even if we don`t always have the answers!....just to put it down and not feel that you are alone and going mad can help!....it seems someone will feel or have felt the same and maybe can offer some advice.....certainly Eileen our expert is extremely helpful.....and has eased my worries somewhat many times to which I am very thankful....
Frustration is now my middle name.....but like you have to strive to carry on....
I wish you well, keep us posted....and keep up the fight!
You do seem to be in somewhat of a quandary. Have you not been given advice from your medical team regarding suitable diet, other than bananas? My understanding is that high fiber is important. Can you manage cooked vegetables as raw foods are currently not possible?
I have a friend on another forum who has had to give up all her fruit and veg because of fibre problems! She does miss her old diet! Wouldn't it be easier to take a potassium supplement - or are you OK with the bananas?
I suppose it isn't that difficult if you stick to original Atkins - that took out everything of course and you ate steak, eggs and cheese! That's why everyone complained of being constipated! But it is hard to adjust to if that isn't your idea of food!
Have you asked for a dietician appointment - they may have some ideas.
Have you checked your Vit D level? There is a great website called the Vit D council.
Even though my level was considered "normal" recent research suggests, but does not necessarily conclude, that the lower Vit D normal levels are not optimum.
i have reactive airway disease and my pulmonary and I are trying higher doses which have helped others with my same lung problem. Interestingly I feel enormously better with the higher dose and seem to tolerate tapering a lot better.
Hi all, I sure appreciate the replies and suggestions. I (and hubby who just needs to shed some #s, too) have now started to do the no carbs. Since I have hard time with raw/nuts/to much fiber, I read some useful info on diet for my colon issue. The one that has helped a lot is taking 2 fiber tabs daily. I started with one, to adjust then upped to 2. They have to be taken after other meds, so they are taken at our noon meal. That has really helped the '10-20 trips to the toilet' in a 24 hr period, that I was experiencing. As to potassium, yes, I was on supplements, but then Dr said 'eat bananas'. Now, trying to go no carb, bananas are HIGH sugar so....eat very sparingly.
I am excited to be down to 2.5 pred daily. So many of the horrid side effects I suffered, are returning to normal...HAIR, BLOATING GONE. But as some others have stated, I also had bone thinning, multi fractured pelvis, no cause, etc, etc. Thank goodness, now, at least I can walk, climb stairs do a bit of yard work, which is a blessing in itself after almost 3 years. I also am on Methrotrexate. Rheumy says probably for a couple of years...time will tell. I wish all of my fellow PMR sufferers, to heal, and take comfort in all the good things, Hugs, Judy in USA
Hi Judy, I had a double fracture ..one in my sacrum and one in my pubis.It happened in November of 2016 but Im still in pain, have to walk with a crutch.Could you tell me about your experience with your multiple pelvic fracture ? Did you have pain that long?0
Gosh...after reading this I suddenly felt lucky.....I "only" have pmr and have "only" gained 30 lbs ...... sometimes knowing what others have to cope with really puts things into perspective! hang in there Judy, and feel better soon. - and thanks for making me feel gratitude for the challenges I don't have.
That's exactly what I thought and it made me realise that I am fortunate. This has been a week of sad stories from friends and I know that I have nothing to complain about. I was aware of that but sometimes it needs reinforcing.
The old adage of "You never miss the water 'til the well runs dry", is so true for us PMR, ers! Even thru all this I am SO thankful for all the improvements I am encountering! I had always been thankful for my good health, and THEN WHAMMO! Hello, PMR! There went my life, as I knew it! But....I can now walk normal, not long, but no walker, or cane, etc. My hair came back, YES! Very hard trying to lose pounds, UGH, and of course, back pain, blotches all over arms, now is very minor. I keep smiling, as much as I can, and adding what I can. Hugs to you all, this forum is wonderful and supportive! Thanks to all
Hi, yes, yes, had to rest, walk with walker, then cane, being careful not to fall. The only way I have relief is injections at pain management. I will do whatever to avoid back surgery. I also take Hydrocone as needed! Per Dr.