I haven't posted for some time but have decided I really need to be back with this site. I have arthritis as well as Fibro and had my knee replacement surgery on September 22-2015.
I should add that neither my surgeon nor my GP really believe in Fibromyalgia and as there is a shortage in GP's here changing doctors is not possible. I had a lot of pain following surgery and as it lingered I came to realize that most of it was muscle pain in the surrounding area and although not as bad as it was in the few months after surgery I still am suffering from it at present, especially after doing and exercise such as walking, I use a cane but have gone back this past week to using my walker while walking outside. If I do my exercise bike for 7-10 minutes it also bothers me through the night. I am in the process of going off Tramacet as it doesn't do me any good. Due to some arthritis in my lower back I am trying very hard not to bend over while standing or walking but need the cane to help me do this.
I have been gluten free as well as sugar free for almost 3 years and understand that some people have been helped by doing this but although I have received many benefits from eating this way making my fibro less painful has not been one of them but who knows, maybe I would be much worse if I have continued with my old eating habits. :-)
I am interested in hearing about others who have gone through surgeries and how their bodies reacted afterwards. Was on gabapentin for several years when first diagnosed and help was minimum. Tylenol 3 has been the most help with pain and am considering asking my GP for a RX but not sure. I think I need something if I want to continue with exercise which I fully intend to do.
I really like this site and am looking forward to hearing from you.
Hi thanks for the update!so sorry to hear of your mobility problems.Its better to use a cane etc than to not use one and fall down i think.So sorry about your pain levels and your arthritis.I try to be gluten free as i feel quite ill after i eat anything with gluten in it.Doesn't affect my pain though when im off gluten.I don't exercise myself as exercise doesn't seem to help me but everyone is different :)I am on gabapentin atm and it only helps my seizures and not my fibro.I havent had any surgery so i can say anything about what fibro is like afterwards i'm afraid.I am on a bunch of tablets for the pain and other meds for other issues.I too have arthritis and back pain.I find an electrical heating pad and hot water bottles and my heated throw help with my pain.
Welcome back, I am glad you really like us. I do too, it is a very positive and informative community, has helped me immensely.
I haven't had personal experience of surgery and it's effect on Fibro, but I do know that it can take a long time to recover (thanks Fibro)! You have provided some interesting observations here. First the fact that being gluten free and sugar free hasn't helped so much with the Fibro. Like anyone with this tricky condition, it can work for some, but not all. For me the important thing is, it suits you and you may feel healthier for it.
The other thing of interest, for me, is your desire to exercise. That is great, but have you thought about modifying it, if you suffer so much afterwards? For me gentle stretches and Tai Chi are kinder to my body, and I am sure others can weigh in with what works for them. Lastly, sorry to hear of your mobility problems, accepting them can feel like giving in, but it's not - you need to find out what works for you! Wish you well.
It's great that you have a doctor who really understands fibro; I have fibro and an autoimmune disease. After major back surgery in January I am still having flares, muscle spasms and fatigue.
I believe that is normal and expected to have flares for quite some time. I take Tylenol arthritis strength 650 mg.--I can't take an anti-inflammatories except a small dose of prednisone. I agree that Gabapentin helps minimally and would not consider going onto Lyrica because of all of the side effects.
It's great that you are exercising. Topricin is an ointment that you can rub on and works great--you can probably buy it on Amazon; it's really expensive in drug stores.
I have had fbro 35 years.. regarding knee surgery - my doctor was very specific about each aspect of the surgery,, but conveniently "forgot" to tell me how painful it was going to be. I think the rehab, which I mostly did at home, was the most painful thing I've experienced. but my range of motion is outstanding and the bone on bone rubbing pain is gone.
that doesn't help the fibro though. in the past six months I've also been using a cane, simply to feel more confident in the things I do. for me healing the surgery was not just moving or stretching but really pushing myself to get full range of motion. my doc recommends ice for my herniated discs, but heat feels better. so I do the things that help ME rather than always doing what supposedly helps the "general public". hang in there. stretch for sure.
Hi. Sorry you are having a rough time of it. My husband had total knee replacement 3 months ago. I know this journey is very painful. We did alot of research before the survey and my husband had to attend a mandatory class before hand. We learned that the exercising will be painful but must be done for the new joint to get one with the biological body and to break up the scar tissue. I don’t know what physical therapy you have or have not had but it will be very beneficial for your healing. It is painful, I kid you not. I know there is nothing gentle about the exercising with the surgical healing and pain of the total knee replacement. My husband has been using pain meds as well as the heat and/or ice as instructed by his physical therapist. The exercises are a real must for this healing. Many people believe that after a major surgery a patient can just go home and rest and recline. It is not the case in joint replacement. Please check with your surgeon and physical therapist. I don’t meant to go on about this but I am concerned about your healing and have been going through this with my husband since his total knee replacement on amarch 9, 2016. All the best!!
HUGGGGGGGGS
Suzie
Hi,have not had surgery so can’t comment on that, hope your recovery goes well.
I don’t know if you are driving yet but one thought I have to make life easier is to get a “Handicapped” car placard. My PCP suggested it when he saw I was using a cane, I would not have thought of it. He said that some times that extra 20 feet or more I don’t have to walk would be helpful and he has been right. In my state, we both fill out a form and I got sent a handicap placard with my driver’s license picture I take out and hang on mirror if I want to use a Handicap spot. You can slide a card down over your photo to remain anonymous and this substitutes for getting a handicap plate. As my FM has gotten much worse, it’s not a bad option to keep in my car glove box. Good luck.
I have had surgeries and they have been the worst experience of my life! I was finally diagnosed with fibromyalgia in 2010 but I went on a quest and gathered my medical records from ALL my doctors prior to that and there were many signs.
I had knee surgery in 2012. Since then I have size up every activity based on the amount of walking, can I drive, and does the location offer wheelchairs. Two months ago I had to endure a hysterectomy. The pain from that has been unbearable, espcially on days with precipitation. Everyone in my life has decided that my pain does not exist because “my vitals are stable” or “I don’t look to be in pain” This has been a very horrifying experience. I feel like I am really mental because noone is hearing me!!!
Hi Rachelle......I am so sad for you as you sound so alone....but you are not alone we all hear you and want to help. You say everyone in your life doesn't believe your pain exists....surely you only have to direct them to all the websites, literature that is around about Fibro for them to understand it really is a medical condition. I appreciate some poor misguided souls will never believe how rotten you feel as Fibro is something you cannot see and there are no scans, X-rays, blood tests etc that will confirm you have it. Have you looked into finding a support group near where you live? Who initially diagnosed your fibro? May be there is something in your medical records that you could show family, friends etc. that you really do suffer from fibro.....
Hang in there Rachelle....remember we are here for each other........Gentle hug Tricky.
RACHELLE said:
I have had surgeries and they have been the worst experience of my life! I was finally diagnosed with fibromyalgia in 2010 but I went on a quest and gathered my medical records from ALL my doctors prior to that and there were many signs. I had knee surgery in 2012. Since then I have size up every activity based on the amount of walking, can I drive, and does the location offer wheelchairs. Two months ago I had to endure a hysterectomy. The pain from that has been unbearable, espcially on days with precipitation. Everyone in my life has decided that my pain does not exist because "my vitals are stable" or "I don't look to be in pain" This has been a very horrifying experience. I feel like I am really mental because noone is hearing me!!!
Sorry to hear you are suffering. Isn't it a minefield. What to try. Side effects etc etc. Then operations adding to it all. Hope you feel better soon! I was on holiday and my foot gave way and I have a broken finger at the moment. I know it could have been worse, so have to be thankful! I am too trying to have gluten free and cut down on sugar, hopefully it may help someway. The trouble with the drugs is side effects as we all know. Trying to find one that suits, I wish you well with that. I have an appointment with the rheumatoid Dr next week it is always a battle though. Either you take the tablets or don't come back. I've never found a nice Dr yet. Suppose we have to keep trying! Good luck with your exercise you seem to hsve a lot of motivation keep it up!! :)
We are knee twins! I had my knee replacement the same time you did. It was horrible to recover from and I am just now getting to the point that I am not wanting my old knee back. It was that bad. I think I have/had PTSD. I have given birth 5 times, some without meds, had major spine surgery and the pain of the knee replacement was the most horrendous thing I have ever experienced. i thought it would never end.
I saw my GP yesterday to talk about adding meds for the residual depression. It is a slow process of recovery, especially with fibro.
Be good to yourself. I am getting better, slowly and I hope you will, too. I am learning it is helpful to hear others' stories but to be careful not to compare myself to others. Everyone is different.
I bought a recumbent bike and I love it for gentle exercise. I am finally able to do full rotations, both forward and backward! It took a long time, but it did happen.
I love bike riding, but my knees don’t allow for it. I wanted to purchase a recumbent bike but they are a bit expensive. I was also swimming but I can no longer afford the YMCA membership. Just one big mess!!!
It's great that you have a doctor who really understands fibro; I have fibro and an autoimmune disease. After major back surgery in January I am still having flares, muscle spasms and fatigue.
I believe that is normal and expected to have flares for quite some time. I take Tylenol arthritis strength 650 mg.--I can't take an anti-inflammatories except a small dose of prednisone. I agree that Gabapentin helps minimally and would not consider going onto Lyrica because of all of the side effects.
It's great that you are exercising. Topricin is an ointment that you can rub on and works great--you can probably buy it on Amazon; it's really expensive in drug stores.
In any event hope that you feel better soon.
Thanks for the mention of Topricin haven't heard of it here in Canada but will check it out. I think you misread the part of that"my doctors believe in Fibromylagia" as neither my surgeon does, in fact he is strongly against it and my GP doesn't really believe it it either." I have an appointment with the GP this coming Monday and haven't made up my mind just what I will ask for as to new meds. Very depressing in a way, but will be off Tramacet by then. I will reply to some of the other comments later on but wanted to thank you for recommending the Topricin. wonder if it's the same as Voltaren which is sold here. Jan
Hi,have not had surgery so can't comment on that, hope your recovery goes well.
I don't know if you are driving yet but one thought I have to make life easier is to get a "Handicapped" car placard. My PCP suggested it when he saw I was using a cane, I would not have thought of it. He said that some times that extra 20 feet or more I don't have to walk would be helpful and he has been right. In my state, we both fill out a form and I got sent a handicap placard with my driver's license picture I take out and hang on mirror if I want to use a Handicap spot. You can slide a card down over your photo to remain anonymous and this substitutes for getting a handicap plate. As my FM has gotten much worse, it's not a bad option to keep in my car glove box. Good luck.
Hi and thanks for your hint about the Handicap sign for the car. I've had one for about 4 years and I must say it has been so much help for me as well. Not many people who have them remove them from their front window placement when they are driving and it hinders vision for sure. I have always removed them especially since if you are in an accident here in B.C. Canada, you can be fined but I don't think many people know that or they wouldn't be driving with them there. Jan
Hi thanks for the update!so sorry to hear of your mobility problems.Its better to use a cane etc than to not use one and fall down i think.So sorry about your pain levels and your arthritis.I try to be gluten free as i feel quite ill after i eat anything with gluten in it.Doesn't affect my pain though when im off gluten.I don't exercise myself as exercise doesn't seem to help me but everyone is different :)I am on gabapentin atm and it only helps my seizures and not my fibro.I havent had any surgery so i can say anything about what fibro is like afterwards i'm afraid.I am on a bunch of tablets for the pain and other meds for other issues.I too have arthritis and back pain.I find an electrical heating pad and hot water bottles and my heated throw help with my pain.
Hi Mandy, thank you for taking the time to reply to my post. I'm glad that you have found the heated articles help you somewhat with your pain. I have used them on occasion but haven't too much lately. Will give it a try now that you have mentioned it. Jan
Sorry to hear you are suffering. Isn't it a minefield. What to try. Side effects etc etc. Then operations adding to it all. Hope you feel better soon! I was on holiday and my foot gave way and I have a broken finger at the moment. I know it could have been worse, so have to be thankful! I am too trying to have gluten free and cut down on sugar, hopefully it may help someway. The trouble with the drugs is side effects as we all know. Trying to find one that suits, I wish you well with that. I have an appointment with the rheumatoid Dr next week it is always a battle though. Either you take the tablets or don't come back. I've never found a nice Dr yet. Suppose we have to keep trying! Good luck with your exercise you seem to hsve a lot of motivation keep it up!! :)
Well I certainly wish you luck with your appointment next week. I have one on Monday and am trying to figure out what to ask for re: medication. I have had some luck with Tylenol 3 but don't know if I can get that. What's up with having doctors that don't seem to understand Fibro. all I want is something that will allow me to do some sort of exercise and not suffer too much afterwards, maybe it's me that doesn't understand, :-) Guess it's one of those days since I think I am somewhat annoyed that as soon as I wake up my stupid knee or should say the muscle surrounding my knee replacement is painful until I take something and even then there's still pain, just less.. Guess I should be grateful that it is not worse but I'm not quite ready for sainthood yet, LOL Good luck next week. Jan
Welcome back, I am glad you really like us. I do too, it is a very positive and informative community, has helped me immensely.
I haven't had personal experience of surgery and it's effect on Fibro, but I do know that it can take a long time to recover (thanks Fibro)! You have provided some interesting observations here. First the fact that being gluten free and sugar free hasn't helped so much with the Fibro. Like anyone with this tricky condition, it can work for some, but not all. For me the important thing is, it suits you and you may feel healthier for it.
The other thing of interest, for me, is your desire to exercise. That is great, but have you thought about modifying it, if you suffer so much afterwards? For me gentle stretches and Tai Chi are kinder to my body, and I am sure others can weigh in with what works for them. Lastly, sorry to hear of your mobility problems, accepting them can feel like giving in, but it's not - you need to find out what works for you! Wish you well.
Hi, really liked you last paragraph. I do stretches for my back and also my legs and they do not hurt me after wards. I have a massage table that I do them on as I'm not too good getting up and down on the floor. I did walk with my husband using my cane for about a week because I usually use my walker and wanted to not have to use it. I then made the decision to go back to the walker this week as it was just too difficult just with the cane so I guess in a way I was accepting what I can do at present ...not what I want to do :-) little steps, right? Really appreciated your reply, Jan
With my total knee, the pain was so awful in the hospital. Was being given pain meds used with cancer patients which gave me no relief. Dr finally sent me home saying, "your fibromyalgia has kicked in and you’ll probably do better at home."
My recovery was very long. Did PT which was important.
I can honestly say it took 3 years for me not to be aware of my knee pain/discomfort each day. The pain was better than what it had been before the surgery though.
I also had a total shoulder 1.5 yrs ago and that was much easier. Some of the difference was the block they gave me before surgery worked very well. With my knee, the block failed.
Also, the dr had me taking 2 types of oxy in the hospital, which so controlled my pain! I was sent home with both but weaned down to just one type within a couple days. I used the oxy off and on for a couple weeks. Recovery went very well.
As for exercise, I think it is crucial to keep moving in some way. It’s important to find what works best for you.
Good luck with everything!