Job question | Arthritis Information

Hello, I'm new to the forum. But I have had PMR now for nearly 5 years. It seems to be getting worse. All of my counts are normal, but the prednisone test and the cortisone shots in the elbows are what determined it for my rheumatologist. Just talked with my rheumy and I guess my ESR is a tad bit high. It is 25.

I am nearly 3 years into this and for the last month my husband

This has made such a difference. I usually snuggle back down and when I wake up I feel ready to start the day!!

Luckily DH is an early riser ( I am a night owl) so I now have breakie when he does before he goes to work.

Maybe others have good ideas on How to Beat or Cheat Fatigue!!!

Hope I have not scared you off with all those questions,

Gentle hugs, Lyn

Well, let's see.

First, good to meet you too, although not this way! LOL

I am 49, got this at approximately 44. I am a female. I type, and I work 2 jobs, one from 4 a.m. to noon, and just starting the other one from 5 p.m. to 9 p.m.

No, don't get much rest and relaxation. Bills have piled up way too high for that. Hubby is 70, and a retired pastor, with no pension, only social security disability from a back injury. He can't work much, but does what he can.

I take 5 mg of prednisone, very low dose, in the a.m., and was completely off of it for a while. I started about a year ago on 20 mg. Before that they had all kinds of thoughts of what I might have, tennis elbow, fibromyalgia, nerve transposition, etc. I went through physical therapy, every nonsteroidal on the market (none of which worked), polar ice treatments, iontophoresis, whirlpool treatments, massages, chiropractic, and a neurologist who told me it was all in my head. Finally a doctor said, well, since no one has been able to figure this out, lets send you to a rheumatologist, and he will know if anyone does. He gave me cortisone shots in my elbows, put me on prednisone and here we are.

I have never been so tired in all my life, but I know its not just because of the working, as lots of people have thought, cause my job just isn't that hard. I am a medical transcriptionist, believe it or not.

The only tests I have had are blood work and a bone scan. Reason for that is I have no money to pay for these tests and I have had to change jobs quite a bit for different reasons. No insurance will cover me now for this, so I'm on my own with the cost. I simply can't afford to have the tests done, plus my rheumy has not even suggested any, and actually, he has never mentioned GCA. I have had migraines most of my life, and these are nothing new, except I am having them more often. No jaw pain or anything like everyone with GCA has described.

For relaxation I go out and mess with my animals of which I have many, and especially my mare, Blaze. I enjoy her, but only get to do that for about 15 minutes. Right now we are putting up the garden food for winter, which is taking a little time as well. However, the tiredness, I just have to stress, has been with me for nearly 2 years now. I just found this site a few days ago, or I would have been asking this earlier.

No, Lyn, you didn't scare me off. It takes a lot to do that. LOL I'm just so glad to find a place like this.

Dunroven;

I am also a medical transcriptionist and have a lot of trouble with fatigue and having to work at this idiot keyboard 8 hours a day. I also suffered daily headaches and migraines for 30 years; however, for some odd reason these totally stopped when I was diagnosed with GCA 3+ years ago, started the pred, and then the PMR kicked in shortly thereafter. I find the fatigue has only worsened even though my pred dose has gone from 60 mg to 2.5 mg a day since starting. I am exhausted in the morning, all day, and exhausted after work. On weekends I find only enough energy to do what shopping I need to do and take naps, which I can't do when I have to be working. I'm totally frustrated with how I feel. I'm employed full time, but my insurance has 00 deductible, so I'm pretty well stuck with the cost of PMR also. I haven't been to a doctor in about 1-1/2 years and adjust my pred as to how I feel, cutting pills into pieces, but now I'm down to my last refill and haven't been able to totally get off the pred.

As for me, I would rather have the migraines back than be stuck with this PMR. At least with the migraines, the new triptan medications worked wonders on them and I never had the prolonged fatigue that is associated with this PMR.

Anyway, welcome to this board. My best wishes to you, Nancy.

Thanks Nancy! What companies do you work for? I am with Precyse and TransTech.

Seems like you know a lot of what I am going through. My problems though are that the migraines have not stopped and in fact, I have been having one today. I even got some Excedrin migraine and took that and nothing happened.

I can afford my prednisone and have plenty of that right now, but my latest labs were 8 and on top of that are the office bill and the 2 cortisone injections, which I have not received the bill for yet. I'm sure that one office visit is going to go well over 0 and I just don't have the money to pay it I had to have the shots though. This time I was losing the use of both arms and that doesn't work very well as a typist.

I sure wish someone could end this misery. I wonder though how much longer I'll have it before I at least go into a remission with it? Mine has been steady for all of the 5 years and no one could figure out what it was until a year ago. That has been very frustrating. My husband got to the point where he didn't believe me when I told him how much I was hurting and how tired I was. I think he is finally starting to though. I told him about the GCA and now he is more concerned. At least that helps a little bit.

Well, going to go take a nap. Thanks for the welcome folks. Glad to have found you!

Valorie

dunroven2008-09-18 12:43:55I have had pmr for just under a year. I did not start recovering until i got off the pred. After i stopped it i had the worst pain - i had to use a walker in the house. But very very very slowly I got better. I only used nsaids with stomach protectors. After seven months i could stop the nsaids but i was still in bad shape. I had started using natural things to try to heal my body instead of all the meds as soon as i knew what i had. Today all i have to deal with is some stiffness. I can walk around the neighborhood, drive, do errands, swim, work out, etc. I even took an airline trip from the south to the Colorado mountains and walked all over the town. I was the only one out of a party of five who did not get altitude sick. The locals told me it is recommended that certain supplemnents and vitamins be taken before going up in the mountains to curb the effects. I checked them out and they were most of what i had already been taking! I feel great. Do have good days, better days, and some downturns. But I just keep getting better. THis is my opinion of the thing. PMR is an autoimmune disease so you have to deal with that and inflammation. Research all you can on this. Check out www.drsears.com - I have taken his fish oil the whole time - huge doses as well as new chapter zymafland, pycogenol - 200 mg, mangosteen juice, and other vitamins, minerals, etc. I think this was key for me. Natural stuff does not work overnight but it is a slow process. My thought is how can your body correct itself when it is fighting all these meds that dont even cure it. Some of these meds suppress your immune system. Scares me. I have been blood tested for signals for Lupus and Hepatitas among other things. So far I am in the clear but that does not mean i could develop lupus down the road. I intend to keep giving my body good things. (I read on the internet that green tea helps stave off autoimmune disease). I was in good health prior to pmr - no meds so this may be only my situation but i want to pass it on. My THIRD rhumy told me that if pmr lasts longer than two years something is wrong. Mixed connective disease or some other problem. Lots of things can present as PMR so you have to be on your toes. He also said that fiddling with your pred dosage is not good practice. For some that may be ok - just passing on some different views. I have found that different rhumys have different views...now all cant be right so i just filter thru the info and come to my own logical reasonings. All i know is that i am now living my life pretty much as i used to. Still cant get down on the floor. Would like to do some exercises from the floor but that will come in time i hope. Cant run either. But to be free of that excruciataing pain and frozen limbs....what a blessing. If I drop the soap in the shower now ....... I just pick it up! And the worse thing my body has to deal with is homemade chocolate chip cookies! Good luck to all.

Thanks for the post Smartie! It sounds like you are doing good with your PMR! I wish I could afford to get those natural things to use them, but all I can afford is ibuprofen and prednisone. I know both are hard on the body, but we just don't have the money for me to use other things. I do enjoy hearing that someone has had success with their disease though. That's wonderful! Keep up the good work!

Valorie

Hi Valorie

I too have managed to kick the pmr but in it's wake it left fibromyalgia which, I find, is far worse. At least with the pmr the pred managed to relieve the pain but no such luck with this miserable one. I am currently on 1/2 mg of pred tapering off. I will be finished next Tues.

Hang in there because your turn is coming to celebrate the end of pmr.

Lots of luck.

Dunroven;

I worked for Spheris but not very happily. Reach retirement age in 2 years. Can't wait.

I have tried some of the recommended enzymes or whatever; Zyflamend and Pycnogenol. I found myself nauseated all the time while I was on them, and I didn't see any result in pain level I usually had from the PMR. I decided, because of their cost and lack of good results, the only one benefitting from them was the company I ordered them from. They are costly, so I stopped when I ran out.

Right now I supplement my 2.5 mg pred daily with a dose of Excedrin Extra Strength in the morning to help with stiffness, and one dose of Motrin (ibuprofen) before bed to help with soreness while trying to sleep. Excedrin has caffeine in it, so can't take it at night. I always thought I would be able to get off pred really quick, but after 3+ years, I'm still on it because every time I've tried to quit, the pain wouldn't let me. When you can't stand up straight, lift your arms to dress or comb your hair, go up or down stairs, etc,, you decide the pred isn't so bad after all. Some day.

I feel for you with your headaches and trying to work. I know what it feels like. Have you ever tried a triptan such as Imitrex, Maxalt, and the like? They worked wonders for me. Maybe the next time you see a doctor you could ask if he/she has any samples. Good luck to you. Nancy

Thanks Nancy. I worked for Spheris for a very short time. Hated it. I mean only 1 month. I quit.

I think I'm going to have to try your regimen. I am having most of the same problems you are, and tonight, my knees were just nearly killing me. I took 4 ibuprofen and it has finally eased up, but now its time for bed. I almost dread going to bed as tired as I am cause I wake up hurting so much. I figured after 5 years, it should be getting better, but it sure is not.

I talked to the doctor about my migraines once, but they told me they want to see me while a migraine is going on. Unfortunately they normally come on around 2 a.m. and then last most of the next day, but no doctor's office is open at 2 a.m. and I can't afford to go to the ER, so I get no help. They wanted to put me on Midrin but that stuff makes me sick, so I can't take it. I just take a migraine medicine. Been taking Advil Migraine, but now am trying the Excedrin Migraine (didn't work very well today). Difference is, Advil Migraine puts me completely out, and I can't work at all, Excedrin has the caffeine and wakes me up, so I just suffer more with the migraine because I'm awake to enjoy it! LOL. I also wrap an ice bag (rice bag) around my head and that helps, or sometimes I put a drop of pepperment oil on my temples and that helps a lot with them as well. My sister sent me that, it works for her, and it at least feels good, whether it helps or not.

I don't have time to let the PMR slow me down. I have to work through the pain, but its hard. Hubby helps with things like fastening my bra if I can't get the arms to work right and taking the laundry to the basement for me, etc. He helps a bunch, but now is getting more concerned with me than before. I think he's finally beginning to see this stuff take a toll on me.

Its hard to deal with.

Hi Valorie, good to see you have had a few posts. Amazing that another is in the same occupation as you!.

The first thing I noticed is that your Pred dosage and that you have also been off it in the first year!!! You certainly don't sound to be anywhere near to be reducing ,if anything you may need to up it! Any reason why you are on such a low dose?

Briefly I was on 10mg for a year, then 7.5 for 9months, 5mg for 1 year. At 4mgs for only 2 weeks and had a major flare so now back to 7mgs and see Rheumy in December.

While some have been able to reduce faster I feel the rest of us , probably the majority, have been advised and only able to reduce slowly. Like all illnesses there are differing degrees and our bodies let us know when they are hurting and need help. With extra stress that you have to deal with and your long working hours no wonder you have migranes and PMR that is roaring as well.

I found this very good article on explaining Fatigue, not sure if you have read it, so I will add the web site. This might be helpful to print out and give to your husband to read as well. We dont understand PMR properly, its frustrating trying to explain to others and then they expect you to be 'better' because you have had it for so long!!!!

My Mum' in the olden days' nursed in a mental hospital and a Drs remedy for patients with a Bad Head was a dose of epsom salts. His theory was to reduce the fluid pressure on the brain. Mum swears it works and it did for a friend of mine. For what its worth a maybe try?

Lastly I was told ( Pain Management ) to take Panadol EVERY 4 HOURS for chronic pain.... EVERY 4 HOURS is the key before the pain is acute.

Hope you are feeling a little

http://www.hss.edu/conditions_14370.asp

Lyn, I have taken the prednisone for a year, but had the disease for 5, so I'm not just learning about living with it. I don't want to be on the prednisone if I can help it. It makes my face so round, I can't lose weight, and I am already morbidly obese and trying to correct that. I was on 20 mg and then tapered down to being off of it, but had to start back when my elbows froze up on me.

I can't afford the other stuff. I can't even go back to see my rheumy anymore. I just have to deal with what I can afford. Prednisone and ibuprofen is it. We don't have money to pay for propane for the winter, which is why I have taken a second job. Scares me that I will still not be able to afford it. With no heat, not sure how we will survive this winter. It gets extremely cold here.

My worst problem with all this is that I also get Raynaud's phenomenon. Last year it was just in 1 foot, now it is in that foot and 1 hand, so it is spreading as well. You are supposed to take more blood pressure medicine for it, but I can't do it. I just can't afford the medicines. Of course they are not the versions that so many places have.

I read the fatigue thing, but I don't think my husband would read it or even want to. He is learning from me what I am needing, but he's not good on reading things like that.

Epsom salts might be good for headaches, but it is also a laxative, and I am not sure I want to deal with that as well, but I will think about it a bit. We'll see. Thanks for that information too!

Valorie;

Just another thought regarding your headaches. Have you tried "Head-On" that is advertised on TV in that ridiculous commercial? I never tried it, but the commercial makes it sound like it may be worthwhile trying. I saw it at Wal-Mart once and recall it wasn't that expensive (I recall under ) for a tube that you rub on your head where it hurts. At least it sounds interesting. Good luck and hang in there.

No, haven't tried it. We haven't been to WalMart in about 100 years and we don't have television. I live in the country and we can't get cable. Have to do a satellite here. We haven't had TV for about 6 years now. We do watch videos, but no TV, so I hadn't heard of it.

If I ever get to a Walmart again, I'll check it out. Thanks!

dunroven

I notice you live in the country. Read the following, but it forgets to say, the leaves only are to be used before it flowers. Take the leaves in a sandwich everyday. It works. I assume you are not near a pharmacist.

Feverfew (Tanacetum parthenium; syn. Chrysanthemum parthenium (L.) Pers., Pyrethrum parthenium Sm.) is a traditional medicinal herb which is found in many old gardens, and is also occasionally grown for ornament. The plant grows into a small bush up to around 18 inches high, with citrus-scented leaves and is covered by flowers reminiscent of daisies. It spreads rapidly, and they will cover a wide area after a few years. It is also commonly seen in the literature by its synonyms, Chrysanthemum parthenium (L.) Bernh. and Pyrethrum parthenium (L.) Sm.

Feverfew has been used for reducing fever, for treating headaches, arthritis and digestive problems.^[1] It is hypothesized that by inhibiting the release of serotonin and prostaglandins, both of which are believed to aid the onset of migraines, feverfew limits the inflammation of blood vessels in the head.^[2] This would, in theory, stop the blood vessel spasm which is believed to contribute to headaches. The active ingredients in feverfew include parthenolide and tanetin. Capsules or tablets of feverfew generally contain at least 205 mcg. parthenolide; however, it might take four to six weeks before they become effective, and feverfew is a remedy for acute migraine attacks. Parthenolide has also been found recently in 2005 to induce cell death in leukemia cancer stem cells. ^[3]

Recently, feverfew has been used by Aveeno skincare brand to calm red and irritated skin.

Adverse effects include: gastrointestinal distress, mouth ulcers, and antiplatelet actions.

Feverfew is found around the world, including the USA, particularly in western states such as California.