Newly diagnosed with other added health issues. - PMRGCAuk

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Newly diagnosed with other added health issues.

Sue8 profile image
Sue8
13 Replies

Hello, I was finally diagnosed with PMR on Thursday 5th July 2012 and put on 20mg of prednisolone daily. I have been going to the doctors for a few years with pain, not so much in my neck but my hands and arms. Along with extreme tiredness. About 3 yrs ago I was told i had impaired glucose and as on March this year was diagnosed with type 2 diabetes for which I take Metformin. I am obese at only 5ft 1in I weighed 15st 11lb. I also have had high blood pressure for several years and take Lisinopril for that.

I was told last year that I had IBS upon going once again for pain in the nether regions stopping me dead in my tracks when it took hold not to mention the cramps.

I also have had a raised C-reactive protein for about 4yrs now and it is stable at 24. Given all this no one ever knew why it was high even with my many visits for pain.

I eventually asked the doctor if I could possible have Fibromyalgia, to which he replied by telling me to look up chronic Fatigue syndrome instead and if I thought it was me to go back and see him. Yes he really did say that :)

It all came to a head on June 21st when I could no longer function with every day stuff that's if I could get out of bed which was always a struggle. Just stirring gravy was terrible with having to change hands to complete the task and as for combing my hair, well i felt like I had been weight lifting first. Anyway, I saw a locum doctor who was lovely. i explained that when I was diagnosed with diabetes my usual doctor had said he thought I could have PMR which I had never heard of. He gave me a reducing dose of prednisolone for 12 days so I could hopefully go on holiday 2 days later in less pain.

Well I have never felt better, I was a new woman and on a mission as so much had lapsed because of pain. As soon as I was down to one a day I could tell it was coming back so I made an appointment to see my usual doctor last Thursday and was finally diagnosed with PMR. Four days on I have had sleep and have got some energy back. I am also almost pain free with just niggles now and then so thank goodness for steroids :)

Not sure I want the side effects though. As a diabetic steroids can raise your blood sugar and your blood pressure so not good for me.

I have my next hb1ac for my diabetes at the end of the month so the reading will be interesting.

Since the diabetes diagnosis I have had to look at my eating habits. I used to eat twice daily but had to change to at least 3 times a day and smaller portions. I now use one of my 6yr old's plates which she thought was funny. in 4 months I have lost 1st 1lb so even though not massive weight loss hopefully it will stay off for doing it slowly. Now my next target is another 13lb to get to 2 stone off. I just hope the steroids don't make me gain it back.

Well that's me for today, you all have a good day as I am with little pain.

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Sue8 profile image
Sue8
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13 Replies
janimaths profile image
janimaths

Brave woman Sue8. You are facing up to the issues. Well done on your weight loss. Felt a little tear in my eye with admiration for you on reading your blog. I have coronary problems plus a leaky aorta and the steroid isn't good for cholesterol levels. Also have IBS, another inflammatory condition. Reason for this was that I was brought up to eat all the wrong things - steak pie, chips, mutton pies, sausage rolls, white rolls, fatty chops, loads of fry ups and precious few vegetables and especially the Scottish diet of sugar which has led to two coronary stents, the first at age 59. Tip: Slimming World - even if you can't make the classes - just buying the magazine is good to retrain eating habits as so much of what happens to our health is due to what we ingest. I can tell you that I have changed to healthy eating and there is a REAL difference in how I look and feel (except when I fall into fudge and chocolate again but I am starting to get a grip. Not easy though I grant you, but we have to try - what other alternative is there?). I also found that the steroid made me retain fluid in my tissues if I overate, and not if I didn't! Simple! With the Slimming World recipes you eat well and more cheaply, and major on vegetables and I guarantee you will like the recipes. And not feel hungry. And your little girl will admire you more than she does at present. Lucky you having a six year old. Kids are lifes greatest miracle. I have a grand daughter that age in London. I am in Glasgow, so the train sees me up and down the country with my sausage dog on my lap.

Best of luck to you. I am rooting for you. Keep it going. We can do it. We can!! (I think I am trying to persuade myself here but if others can do it I can too.....)

Sue8 profile image
Sue8 in reply to janimaths

Thank you Janimaths. My 6 yr old was a large surprise :) but a nice one I home educater her along with my 13 yr old son with special needs. She keeps me on my toes. I tried slimming world about 3yrs ago and only managed to lose 7lb in about 6 months and 4lb of that was the first week :( I think just eating smaller portions and regularly helps. Obviously cutting out the crap. My blood sugar was only 4.9 on getting up this morning so steroids not putting it up at the moment but I suppose there is time yet as only been on them for 5 days. I have pain in my neck this morning but it is manageable and my left arm was stiff this morning but good now. Onwards and upwards.................... :)

Annodomini profile image
Annodomini

Good luck Sue8. I have been taking Pred for just over a year and am now down to 5 and 6mg on alternate days. The initial high dosage made me feel like a new woman but that couldn't last forever and I still have off days. I was determined not to put on weight with steroids as everyone said I would and, joining Weightwatchers on line, I was able to lose over a stone. But I eventually fell off the wagon and daren't get on the scales at the moment. I have signed up again with WW on line because I know I mustn't let this upward trend continue. So, dear Sue, don't do as I did - do as I recommend. I think Slimming World is available on line too.

Sue8 profile image
Sue8 in reply to Annodomini

I still have my last slimming world books if I need them but I am doing ok alone something I have never managed before. Having this support on this group is fantastic.

janimaths profile image
janimaths

I agree. I have learned things here that I needed to know. Finding information has been a major hassle. And this website is so well designed and functions beautifully. See y'all here again sometime soon no doubt.

Sue8 profile image
Sue8

Slept well again but awoke with neck and arm stiffness :( My fingers in one hand hurt and can't bend them properly yet. Hoping once had breakfast and steroids I will be a little better. Blood sugars ok so that's a plus. Got a lot of stuff to sort out today ready for new units coming Friday so that will keep my mind off pain. Hope everyone else is doing well :)

in reply to Sue8

Hello Sue8,

I have had PMR for 6 months now and am on 7.5mg of Prednisolone , I have problems with stiff fingers, neck, shoulders, arms and elbows, so I am stuck on that dose now until my next review in September.

Congratulations on your weight loss ! I have lost 3 stone so far this year, 2 of which on steroids. I go to Slimming World , and it may be worth going to another group if you had a go with Slimming World once. It could be the group or leader wasn't supportive enough last time . I have got brilliant support both from my group and the leader and it makes it much easier, when it's a long hard battle due to feeling grotty all the time, to have a room full of people cheering you on!

I too am at home, caring for a disabled Daughter, and some days are tougher than others. I have had to learn to slow down and pace myself - but I still carry a heavy shopping basket with one hand and push the wheelchair round Marks and Spencers with the other and wonder why the next day I feel so rough!!!

Keep smiling!

Sue8 profile image
Sue8 in reply to

Aww bless yer. I am my 13 yr olds carer as he has global learning difficulties. He gets DLA and I get carers allowance. It would be great if the steroids helped me lose more weight :) I am on 20mg for the first month. I have to say everything points to this being something only over 60's suffer with and all the leaflets that came today from this group also suggest the same. But I am not quite 49 yet and have suffered for a couple of years before diagnosis. So am I in the minority?? I have been emptying cabinets today and taking to a shed until my new units are done I bet I will know it tomorrow :( But yes I will keep smiling and carry onward and upward. x

in reply to Sue8

My Daughter is 20 and has Down's syndrome and Autistic Spectrum Disorder and can't walk far. I was only just 50 when I got my diagnosis - the hospital consultant even now says that I have "all the appearances of having PMR" and that is as close as he will commit to my diagnosis because of my age! My Mum jokes that I will be in a nursing home before she is!!! xx

Sue8 profile image
Sue8 in reply to

We have just gone through over 2yrs off assessments with my son for ASD but they say he has not got quite enough traits so said he has global learning difficulties instead.

No what you mean about your mum , can run rings around me :)

As thought after yesterday I am in pain today mainly on my right but hopefully it will ease one had the fab tabs :)

in reply to Sue8

Take care, be kind to yourself, it is so easy to put yourself last on the list. I am slowly learning that it is ok to sit down and rest a while - but I don't half feel guilty for doing so!

Hi all,

What can I say. The 4 of you are STARS. I could hardly cope with my lot. The loss of strength and stamina in the beginning brought me to the edge of despair. It has got much better with time. I now feel much more like my old self.

Pats.

Sue8 profile image
Sue8 in reply to

I was struggling to cope Pats especially doing everyday stuff. And the chronic fatigue was unbearable at times but I am getting there and to be honest not sure where all this strength to do stuff has come from. I am in a lot of pain this morning but got stuff to do again though nothing like yesterday. Most of my lot are old enough to sort themselves out anyway it is only my 6yr old that needs me to do stuff for her. We go with the flow to be honest as I said before I home educate her and my 13 yr old son so we have all day to do our learning.

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