Aa
Chronic pain
Up until 3-4 years ago I was healthy and full of energy. Other than a few aches and pains that came and went in felt good. about 4-5 years ago I began noticing stiffness in my knees after sitting in meetings longer than 30 minutes.
3 1/2 years ago I suddenly had extreme pain in my left knee. X Ray showed very early osteoarthritis, but nothing to extreme. MRI showed torn medial meniscus. In the mean time i developed a lot of swelling a d tenderness in both knees. The following is my timeline up until now. I feel like no Dr is really listening to how I feel. I need help.
Orthopedic Dr.
Told to take ibuprofen
Gave me 2 steroid shots - only pain relief was from numbing meeds in shot
Dr. scoped right knee to trim tear and clean out joint
Pain continued (both knees)
Dr. gave me shot in right knee 3 more times to help cushion joint - no relief
I went back to GP insisting the problem seemed more systemic as I had also gained 30 lbs, but couldn't exercise because of pain.
Did full work up of blood work, including lyme disease. Everything normal.
She sent me to local Rheumatologist.
Drew fluid from knee and more blood work. Slight elevation in fluid, bloodwork normal. At first he began me on meeds for gout, but after blood work normal and no crystals on fluid stopped those meds. By now it is a year and a half after initial onset. Pain has increased, I can hardly walk, very swollen knee joints, and a lot of fatigue. After several drugs I end up on Tramadol (pain), Nabutome (inflammation), Bisoprol (high blood pressure, prescribed by GP four years prior when I gained 30 lbs). Cymbalta (pain) I was also told to take Osteobi-flex, Citrical, and 2000 units of vitamin D daily.
Some pain relief and some reduction in knee swelling. Now other joints are hurting, both hand, both feet, ankles, jaw, and fatigue increased. I asked to go to a different Rheumatologist for another opinion. She has diagnosed me with seronegative rheumatoid arthritis. I added methotrexate to meds. it has been 5 weeks and my dose is up to 8 - 2.5 mg once a week. I haven't noticed any improvement yet. I am so fatigued. I decided to quit the cymbalta to see if I could feel more alert and have more energy. It's only been a week, so no change yet. I had a visit to rheumy on Thursday last week whom now says my liver enzymes were up slightly in Oct and are still up, so she is watching this. Could be the Cymbalta, so I am glad I stopped that, but I am in a lot of pain, especially in my legs (knees) and upper thighs. (still hands, feet, jaw also), (eyes have become dry, feels like sandpaper under eyelids). I also have what my GP says are fatty tumors in my front thighs. They hurt if I push on them. Now have gained total of 50 pounds I. last four years, too tired and too much pain to exercise. I do work - 50 to 60 journey work week. When I come home
I am so fatigued all I want to do is get off my feet and rest. HELP I am miserable and not at all the person I was just 4 to 5 years ago. Please give me some advice.
3 1/2 years ago I suddenly had extreme pain in my left knee. X Ray showed very early osteoarthritis, but nothing to extreme. MRI showed torn medial meniscus. In the mean time i developed a lot of swelling a d tenderness in both knees. The following is my timeline up until now. I feel like no Dr is really listening to how I feel. I need help.
Orthopedic Dr.
Told to take ibuprofen
Gave me 2 steroid shots - only pain relief was from numbing meeds in shot
Dr. scoped right knee to trim tear and clean out joint
Pain continued (both knees)
Dr. gave me shot in right knee 3 more times to help cushion joint - no relief
I went back to GP insisting the problem seemed more systemic as I had also gained 30 lbs, but couldn't exercise because of pain.
Did full work up of blood work, including lyme disease. Everything normal.
She sent me to local Rheumatologist.
Drew fluid from knee and more blood work. Slight elevation in fluid, bloodwork normal. At first he began me on meeds for gout, but after blood work normal and no crystals on fluid stopped those meds. By now it is a year and a half after initial onset. Pain has increased, I can hardly walk, very swollen knee joints, and a lot of fatigue. After several drugs I end up on Tramadol (pain), Nabutome (inflammation), Bisoprol (high blood pressure, prescribed by GP four years prior when I gained 30 lbs). Cymbalta (pain) I was also told to take Osteobi-flex, Citrical, and 2000 units of vitamin D daily.
Some pain relief and some reduction in knee swelling. Now other joints are hurting, both hand, both feet, ankles, jaw, and fatigue increased. I asked to go to a different Rheumatologist for another opinion. She has diagnosed me with seronegative rheumatoid arthritis. I added methotrexate to meds. it has been 5 weeks and my dose is up to 8 - 2.5 mg once a week. I haven't noticed any improvement yet. I am so fatigued. I decided to quit the cymbalta to see if I could feel more alert and have more energy. It's only been a week, so no change yet. I had a visit to rheumy on Thursday last week whom now says my liver enzymes were up slightly in Oct and are still up, so she is watching this. Could be the Cymbalta, so I am glad I stopped that, but I am in a lot of pain, especially in my legs (knees) and upper thighs. (still hands, feet, jaw also), (eyes have become dry, feels like sandpaper under eyelids). I also have what my GP says are fatty tumors in my front thighs. They hurt if I push on them. Now have gained total of 50 pounds I. last four years, too tired and too much pain to exercise. I do work - 50 to 60 journey work week. When I come home
I am so fatigued all I want to do is get off my feet and rest. HELP I am miserable and not at all the person I was just 4 to 5 years ago. Please give me some advice.
Thanks for the links. I will definitely read the article. I don't have a Facebook page. I deleted it when I began my current position (elementary school administrator), too many people want to be your friend that you don't really want as a "friend" and don't want to offend them. One never knows what someone might do with information posted on Facebook page that might damage an public education career.
I don't really drink, except a glass of wine if we go out occasionally. I haven't even had that since starting mtx. I have thought about giving up all bread and sugar. I don't take any herbal supplements. I try to avoid things that have a lot of preservatives. That is a challenge these days. I believe the level of preservatives in things we buy at the store is much greater than it was 30 years ago and this has to play a part in health issues. It used to be I would buy 5 lbs of flour and if I didn't use it in a month I would have bugs and need to throw it away. Now it never gets bugs - pretty scary!
I don't really drink, except a glass of wine if we go out occasionally. I haven't even had that since starting mtx. I have thought about giving up all bread and sugar. I don't take any herbal supplements. I try to avoid things that have a lot of preservatives. That is a challenge these days. I believe the level of preservatives in things we buy at the store is much greater than it was 30 years ago and this has to play a part in health issues. It used to be I would buy 5 lbs of flour and if I didn't use it in a month I would have bugs and need to throw it away. Now it never gets bugs - pretty scary!
There are as many schools of thought on diet as there are people. :) Obviously, following a healthy diet is the best thing to do. Fruit, veg, lean meats and fish high in omega-3, whole grains, complex carbs, low in sugar etc. You should be avoiding all alcohol while on mtx, at least until you've had several normal liver enzyme tests.
From talking to other patients, there are some things you might try.
Eliminating suspected inflammation triggers in the nightshade family: potatoes, tomatoes, eggplant, sweet and hot peppers (including hot sauce and cayenne pepper), and a few more I can't remember at the moment. I'm sure it's out there on the web somewhere. It's not proven that these foods cause problems, but here's where you pain diary will come in handy. You might notice a pattern of worsening symptoms after eating certain foods.
Going gluten free: a growing number of patients I talk to have tried this and it seems to help.
Blood type diet: Based on a book called "Eating right for your blood type", I believe it has you avoid certain foods based on your blood type. I don't know anything about the science behind this but you might do just as well on your own by looking at your overall food choices and picking something to eliminate to see if it makes a difference.
I myself have never noticed that any one thing seems to make me feel worse or trigger a flare. Except perhaps certain herbal supplements that purport to boost your immune system during cold season - echinacea and goldenseal. I took that a couple times and noticed my RA worsened, so I never take anything that's sold as an immune booster. Like Zicam or Airborne.
You are right, no one understands how much pain we are in because it's one of those invisible diseases. Go on the web and look up "the spoon theory" essay. It can be very helpful in breaking it down for family and friends. If you happen to be on Facebook, look for a page called RA Chicks, a growing community of women (and men) who share laughs, tears and information. Creakyjoints.com also has a good message board.
It sounds like you are kind of a type A personality. :) So is my husband, bless his heart. lol I know it's tough when you're used to go, go, go all the time, but it's time to be kind to yourself and slow down. That means learning to say no, gracefully, and mean it. If you're used to keeping your house spotless, lower your standards. There's such a thing as "clean enough". Save every bit of your energy for the essentials - everything else, and I mean EVERYTHING, is expendable. This includes activities and people who suck away your time and precious energy. When my kids were little, I figured if at the end of the day they were fed, happy, and had no bones sticking out, it was a good day. ;) Remember if you don't guard your own health, no one else will do it for you. You have to "put on your own mask" before you can be there for someone else.
Hang in there!
From talking to other patients, there are some things you might try.
Eliminating suspected inflammation triggers in the nightshade family: potatoes, tomatoes, eggplant, sweet and hot peppers (including hot sauce and cayenne pepper), and a few more I can't remember at the moment. I'm sure it's out there on the web somewhere. It's not proven that these foods cause problems, but here's where you pain diary will come in handy. You might notice a pattern of worsening symptoms after eating certain foods.
Going gluten free: a growing number of patients I talk to have tried this and it seems to help.
Blood type diet: Based on a book called "Eating right for your blood type", I believe it has you avoid certain foods based on your blood type. I don't know anything about the science behind this but you might do just as well on your own by looking at your overall food choices and picking something to eliminate to see if it makes a difference.
I myself have never noticed that any one thing seems to make me feel worse or trigger a flare. Except perhaps certain herbal supplements that purport to boost your immune system during cold season - echinacea and goldenseal. I took that a couple times and noticed my RA worsened, so I never take anything that's sold as an immune booster. Like Zicam or Airborne.
You are right, no one understands how much pain we are in because it's one of those invisible diseases. Go on the web and look up "the spoon theory" essay. It can be very helpful in breaking it down for family and friends. If you happen to be on Facebook, look for a page called RA Chicks, a growing community of women (and men) who share laughs, tears and information. Creakyjoints.com also has a good message board.
It sounds like you are kind of a type A personality. :) So is my husband, bless his heart. lol I know it's tough when you're used to go, go, go all the time, but it's time to be kind to yourself and slow down. That means learning to say no, gracefully, and mean it. If you're used to keeping your house spotless, lower your standards. There's such a thing as "clean enough". Save every bit of your energy for the essentials - everything else, and I mean EVERYTHING, is expendable. This includes activities and people who suck away your time and precious energy. When my kids were little, I figured if at the end of the day they were fed, happy, and had no bones sticking out, it was a good day. ;) Remember if you don't guard your own health, no one else will do it for you. You have to "put on your own mask" before you can be there for someone else.
Hang in there!
Thank you for your thoughtful comments and advice. I know I am experiencing a great deal of frustration and don't believe any one around me understands how absolutely miserable I feel. They can't, because this just isn't me. I have always been very high energy. I just drove home from work in tears because my feet and knees hurt so bad and I am so unbelievably fatigued. Reading your post gives me some encouragement that maybe there are answers for my misery. Keeping a pain diary is a great idea because the intensity does vary throughout the day. Sometimes I get so fatigued I can hardly carry on a conversation or think. I am an educated and intelligent person so this is also very frustrating. Do find that diet has any effect on your symptoms? Are there foods you avoid?
Hi there,
Five weeks is not enough time to figure out if methotrexate is going to work for you or not. A fair trial for any RA med is a good three months - it takes time to build up in your system.
It might be a good idea to keep a written pain diary to document your pain level on a day to day basis, what you're taking, when you took it, what activities specifically make you feel worse (or better). The reason for this is, when you're in constant pain, the days seem to run together and you may not notice slight improvements that could be signficant. A diary will teach you to pay close attention to your body.
Psoriatic arthritis is related to RA, this is why she asked you about psoriasis. There are many diseases that can be classified as autoimmune, including type 1 diabetes, so any family history you can recall can be helpful. However sometimes there just isn't any clear explanation for why RA strikes.
There are a wide variety of medications available these days for the treatment of RA. What medications - or combination of meds - works is individual to each person, so you may have to go through several trial periods to figure out what is effective for you. Methotrexate (mtx) has been around for many decades and is considered a good place to start, along with other meds called placquenil and sulfasalazine. If mtx turns out to help somewhat but not enough, a biologic such as Enbrel, Humira or Remicade can be added. Mtx and Enbrel is my "magic combo".
Also keep in mind that each patient is different in terms of what symptom patterns they experience, how fast the disease progresses, how severe it is, and what works for them. So it's important not to compare yourself to other patients. No two are alike. When I hired my rheumie I asked her why she went into Rheumatology, and she answered "I like solving puzzles." That, in a nutshell, is rheumatology.
Your fatigue level is common with RA. You could also be experiencing fibromyalgia, which often goes hand in hand with RA.
Be VERY careful about stopping meds on your own, particularly things like Cymbalta. Stopping some meds cold turkey can be dangerous. Always inform your doctor and get advice before stopping anything or starting something on your own, like a new diet or supplement.
Hope this helps!
Five weeks is not enough time to figure out if methotrexate is going to work for you or not. A fair trial for any RA med is a good three months - it takes time to build up in your system.
It might be a good idea to keep a written pain diary to document your pain level on a day to day basis, what you're taking, when you took it, what activities specifically make you feel worse (or better). The reason for this is, when you're in constant pain, the days seem to run together and you may not notice slight improvements that could be signficant. A diary will teach you to pay close attention to your body.
Psoriatic arthritis is related to RA, this is why she asked you about psoriasis. There are many diseases that can be classified as autoimmune, including type 1 diabetes, so any family history you can recall can be helpful. However sometimes there just isn't any clear explanation for why RA strikes.
There are a wide variety of medications available these days for the treatment of RA. What medications - or combination of meds - works is individual to each person, so you may have to go through several trial periods to figure out what is effective for you. Methotrexate (mtx) has been around for many decades and is considered a good place to start, along with other meds called placquenil and sulfasalazine. If mtx turns out to help somewhat but not enough, a biologic such as Enbrel, Humira or Remicade can be added. Mtx and Enbrel is my "magic combo".
Also keep in mind that each patient is different in terms of what symptom patterns they experience, how fast the disease progresses, how severe it is, and what works for them. So it's important not to compare yourself to other patients. No two are alike. When I hired my rheumie I asked her why she went into Rheumatology, and she answered "I like solving puzzles." That, in a nutshell, is rheumatology.
Your fatigue level is common with RA. You could also be experiencing fibromyalgia, which often goes hand in hand with RA.
Be VERY careful about stopping meds on your own, particularly things like Cymbalta. Stopping some meds cold turkey can be dangerous. Always inform your doctor and get advice before stopping anything or starting something on your own, like a new diet or supplement.
Hope this helps!
Yes, the first rheumatologist did. The current Doctor has not even mentioned this as a consideration, but I will ask her. I don't have any rash. Surely within the vials and vials and vials of blood she has drawn this was twsted for again. She did ask me at my visit last Thursday if anyone in my family has a history of psoriasis. No one does, but I thought this to be a strange question given the fact that I have no rash except an occasional bout of excema on my legs.
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