All these symptoms are getting me down!!
Posted , 11 users are following.
Over the last 16 months I have, with the help of my Doctor, managed to bring my dose of steroid down from 60mg a day to 5mg a day. Sadly I have had to return to a 15mg dose due to my inflammation levels increasing.
I feel very very tired and have aching tired neck & shoulders, as well as aching spine and hips. I have also been very clumsey and tend to be rather irattic when I walk. I have dizzy spells and do get headaches. As well as PMR I also have GCA plus I have bad anxiety.
Are all the symtoms quite usual with these conditions?
Any advice would be much appreciated - Thank you
0 likes, 16 replies
Flutterbie57 Abella-Linda
Posted
It really is a pain in the neck ! I have good days, bad days and terrible days. I occasionally let myself wallow in misery for a day or two, but then I come back fighting.
I have been diagnosed for 3 and a half years.
I am very lethargic most of the time. I believe you can take enough pred to give you relief. I have Fibromyalgia as well, so I ache in those two spots as well., but that is probably not from PMR. It is the first time I have seen anyone mention clumsiness and erratic walking. I am clumsy and my "feet are all over the place" when I walk. I was aware I wobble sometimes, but I put it down to just being too tired to really think what I am doing. A friend who I had not seen for quite a while commented on my new walk - she was watching my feet go "all over the place". I do get bouts of frontal headaches which they say is not sinus related. And anxiety........... Yes . I diagnose it as many other things as well. My health has been deteriorating again for the last few months (as yet undiagnosed) and my symptoms have really been getting me down, so my moods have changed, and depression, frustration, anger and anxiety kick in really quickly , but they usually don't last long.
I do hope you settle down again and get back into the new rhythm of life.
Abella-Linda Flutterbie57
Posted
Hello Flutterbie
Yes like you I have good and bad days and I do get very lethargic too. I could sleep all day and all night but I have a lovely dog to care about therefore I do get encouragement to start the day!Wobbling all over the place is a problem as i managed to fall up the kerb in my village 'Bang' onto my knees, which are swollen enough but now have lovely bruises and scratches all over them! So be careful.
I do feel under pressure as I want to get back to my work but just as I feel that it maybe in my grasp I have a big set back - now that says something doesnt it!!!!
Good Luck following your path and I truly hope things get better in 2019
Silver49 Abella-Linda
Posted
Don't be in a rush . to get back to work as it could knock your progress back. You'll know when you're ready. The stress of the festive period doesn't help. I think part of the problem with this condition is we often look so well which doesn't help others know we are struggling. I am fortunate in that I think I am seeing the light at the end of the tunnel. I must admit though, yesterday I felt like a tin soldier, I was so stiff and sore after all the preparations for Christmas day. Today I am fine. My muscles are so in need of some exercise though I am moving but they need toning. Be kind to yourself and don't lose time over anyone who is so unsympathetic.
EileenH Abella-Linda
Posted
All you describe there is absolutely typical of PMR - and PMR, I'm afraid, can be a symptom along with the others for for GCA. You have reduced your dose too far for you and the PMR side of your GCA has surfaced. GCA alone is easier to be rid of than GCA and PMR and we won't even think about PMR alone! The symptoms you list are all things that would lead us to tell someone it was perfectly possible they did have PMR.
I'm a bit surprised Flutterbie says she's not heard people complain of clumsiness and erratic walking, maybe she hasn't been around here long enough - quite a lot of people over the years have mentioned it. We used to complain so much about the china and glasses that were no more!!! I could trip over my own feet - and often did - in the 5 years I had PMR pre-pred although it did improve a lot once I was on pred. Many people complain of the PMR waddle and there are doctors and physios who say they can diagnose PMR from the walk alone!
Is the headache similar to the ones you had originally with GCA? Relapses of GCA are not uncommmon in the first 18 months after diagnosis and they are usually due to reducing too fast or too far. You are not reducing relentlessly to zero - you are looking for the lowest dose that manages the daily additional inflammation as well as the starting dose did. How fast were you reducing as you arrived at 5mg and how big were the steps? If the headaches are like the start and don't improve at 15mg do be in touch with your doctors.
How mean of this to turn up for Christmas - but it is also perfectly possible you have been overdoing things in the run up to xmas and stress of any sort can poke PMR/GCA into life. Now you need to rest and let the pred work its magic. Everyone else can row the boat.
Flutterbie57 EileenH
Posted
I am so surprised that I have not read a thing about the clumsiness before. I feel a little better about it being part of PMR and it might eventually go away. I had often thought how lucky I am to be living in a small country town with big wide uncrowded footpaths, so I can wobble along. I have nearly been taken out by motorized scooters and wheelchairs before, because I veer off the track.
EileenH Flutterbie57
Posted
One lady was actually stopped by the police - suspected of being drunk!!!!
Abella-Linda EileenH
Posted
++Thank you so much Eileen for taking the trouble to answer during this silly busy season!
I have been reducing the steroid at 1mg a month for about the last 7 or 8 months as suggested by the consultant before he relocated to London! My Doctor has been caring for me since then.
The headaches are similar to when the GCA started but i am not having the awful jaw ache, plus I am not as deaf as when that started either (only a little). I can still get very confused and I easily forget things - but I try and laugh it off and my friends help by making 'light' of it.
I do get very tired if too many things are going on around me as I cant concentrate on it all.
Yes Christmas has been stressful but mostly due to my daughter-in-law for whom I can do nothing right and also believes that I am making all of this up!! The fact that when this started I looked like death and could hardly move as it all hurt so much it made me scream, seems to have passed her by!! She has been classed as a narcissist who tramples all in her path - quite like poison to me as I am going through this!
I do take venuflaxin for anxiety but i feel that it only scratches the surface.
You cant wave a magic wand for me Eileen but the understanding and wise words go a long long way. Thank you and I wish you a very happy 2019
EileenH Abella-Linda
Posted
I (still, unfortunately) have a son in law who was made to match your DIL - though his reaction tended always to be apathy rather than nastiness. Role on January when my daughter assures me the divorce should come through - after a mere 6 years! OTOH my MIL was the sort who couldn't cope with not being the centre of attention - but she died 26 years ago. But SIL was OK to us - just his wife he trampled on, total control freak behind the scenes. Shame your son is still married - maybe we could have got my SIL and your DIL together!!!!
Remember even GCA starts small and if you have a headache and other GCA-type symptoms you need to get back to a decent dose or you risk it progressing and you really don't want that. And put some distance to that DIL...
patricia63303 Abella-Linda
Posted
The best cure for anxiety is an SSRI antidepressant. Lots of people don't want to take an antidepressant, but they are relatively without side effects when you get the right one for
your body (which can take awhile). Anxiety is terrible, and it is often followed by fatigue
and depression. Give yourself a break.
I have a relapsing, remitting form of depression. It's come on about 5 times in the past
15 years, following a stressful period. This time the stress of moving brought on depression
AND PMR.
The depression usually starts with anxiety, and then I start building up the antidepressant dose.
This time I had to go to the highest dose and it still took a month to go away. It took two more
months for me to get diagnosed with PMR and start the Pred. Now I am tapering off the
antidepressant again.
Flutterbie57 patricia63303
Posted
I am on an antidepressant, but I know my mood swings have moved up a notch. I don't think I usually suffer from anxiety, but for three weeks pre Christmas I was so anxious this year. Two days ago it all dissolved , and I felt relaxed again (I hadn't finished what I wanted to do tho).
What is the highest and lowest antidepressant dose you take ? I did discuss it with my Dr, but I was told not to change it.
I accepted my limitations for a long time, and I have just got overly frustrated again which has bought on some weird mood swings. I booked a holiday because of this and hopefully I will settle down again.
patricia63303 Flutterbie57
Posted
The dose of the antidepressant depends on the specific medication. I take
Effexor (venlafaxine) and the lowest dose is 37.5 mg. I can increase it up
to 225 mg (3X 75mg) when needed. Higher doses than that wouldn't make any difference, according to my practitioner. Eventually I start to feel
very sleepy on the high dose, after the stress, whatever it is, is gone, and
I start to slowly decrease the dose again over a few months. Since this
has happened about 5 times already, I know what my pattern is and I know
what to do. Everybody is different, and there are different SSRIs with
different dosage ranges, so you do need some guidance from your doctor. Maybe you can see him/her after your vacation if you still don't feel right.
My first psychiatrist used to say when we were working on finding an antidepressant that worked for me: "I don't want you to say 'I think I feel
a little better', I want to hear you say 'I feel like myself!' I keep that as my
guiding rule. Have a great holiday!
Abella-Linda patricia63303
Posted
Thank you Patricia yes I do take an anti anxiety medication but it only scratches the surface!
All made worse by a family member who insists that I am making up my illness of PMR & GCA....... Urrrrrrgh
Again thank you for your kind words and I do hope that 2019 is a good year for you
Flutterbie57 Abella-Linda
Posted
Onwards and upwards. Let's all plod on into 2019
Elvisk patricia63303
Posted
Are you still on Effexor ?
Utaker Abella-Linda
Posted
i have a question my husband has been on 20mg now tapered to 18mg after 3 months. Since being on the prednisone he has started an unbearable snoring at night. I have had to leave the room in the middle of the night or wear ear plugs. We have tried strips, sprays, humidifiers.....anyone else have this? you can hear him four rooms away it is that loud.
HELP
EileenH Utaker
Posted
PMR itself can lead to snoring - I snored quite badly for the 5 years I had PMR before I started pred. I assume it was because the muscles in the neck are weaker. Once you are on pred and start to gain weight around the neck that can lead to snoring.
Does he snore regularly? By that I mean, does he have episodes where he stops, almost stops breathing? And is he sleepy during the day? If so, do speak to the doctor about it and ask about the possibility of a sleep study - several people on the forums have been found to need cpap masks as they have sleep apnoea.