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Posted 7/30/2012 12:04 PM (GMT 0)
Hi all,

I've been away for a while because my Fibro got out of hand lately and I haven't felt up to posting. I can't believe how bad it has been in the last few months. I've even had to stop working for now. My hips, shoulders, neck and feet have been really bad. I've had a load of cortisone shots, a couple of surgeries done and a few trips to hospital and nothing seems to have worked. Most days I find it painful to even stand up or walk. I've also been told I have arthritis in at least my shoulder. I really can't believe this happened to me, I used to be active, I loved fly fishing and DIY work. Now I can't do anything apart from sit around the house (at least the olympics are on now). I'm on 600mg of lyrica and 400mg tramadol SR a day, they do help but how can I still feel so much pain, it's ridiculous.

Should I try different pain killers? I'm afraid to change because they work for some pains like the abdominal pain and general muscle pains, if I change I'm afraid that those pains will come back. What combination has worked for you?

Does anyone have some tried and tested help for arthritis? I'm taking high strength glucosamine and cod liver oil and they seem to help a bit.

Thanks for your help.

Sean
37yo male
Posted 7/30/2012 12:36 PM (GMT 0)
Sean, I'm sorry you are having such difficulties.  First of all, the cortisone wouldn't help fibro because fibro isn't an inflammatory illness but it would help with arthritis.

 

Have you seen a GOOD rheumatologist...one who treats fibromyalgia patients?  I was getting worse last winter and that shouldn't happen with fibro...not as bad as I was getting.  My neck, back, hips and raw nerve pain running down my legs made me finally see a rheumatologist.  After much blood work, x-rays, and two MRI's, it was discovered that I also have ankylosing spondylitis.  The pain affects all the areas that were killing me.  I was put on ibuprofen and a muscle relaxer caller Robaxin and I'm sooooo much better now.  The raw nerve pain in my legs is gone.  I do have back, neck, and shoulder pain but keep in under control with the ibuprofen, Robaxin, and extra strength Tylenol.  It's made a world of difference for me.  I even could fly fish if I wanted to.  wink    I might be in a little more pain for several days after but at least I could do it.

 

So do get thoroughly checked out.  I was so surprised with this diagnosis because the pain was in all the areas that have hurt me the worst for years...but then it got REALLY bad.  It's so easy to blame everything on fibro. 

 

Let us know what you do find out because we really do care about you.

 

Sherrine

Posted 7/30/2012 12:38 PM (GMT 0)
are you taking malic acid and magnesium? They seem to work the best. What about diet? all of these help
Posted 7/30/2012 12:40 PM (GMT 0)
Hi Sean,

Yes there are other pain killers, if you want to get into the opiates. A lot of people don't, and that is truly understandable. If you do, start out with a low dose, say maybe vicodin. Eventually (and it can be a long time) we build tolerance to them and have to live on something stronger. I have been going up the ladder really slowly so I don't run out of options. It is hard with fibromyalgia. For arthritis pain, I take celebrex. It works fantastic. But the down side is that it is hard on the stomache. So you always have to take it with food. But it is a good pain killer for arthretic type pain. I hope that you find what works for you...

Keep us posted...

Hugs...
Posted 7/30/2012 1:05 PM (GMT 0)
I also forgot to mention that fibro pain can flare with the weather.  It you are having a lot of rain or barometric pressure changes, your pain can be worse.  You also need to keep moving...walk every day, do stretching exercises, etc....all the stuff I mention on the forum.

 

I do take malic acid/magnesium supplements, vitamin D3 supplements, and an alternative pain product called Curamin.  These do help with fibro pain BUT they didn't help with the type of pain I was experiencing last winter.

 

Sherrine

Posted 7/30/2012 5:42 PM (GMT 0)
Thanks very much for your responses.

Sherrine, I thought I was seeing a good rheumy but I found out lately that he is not the best, and found out the hard way. He sent me to a orthopedic surgeon because he said I had bursitis in my shoulder that turned out to be arthritis, and because I had plantar fasciitis and carpal tunnel syndrome. So far the injections and surgeries have not worked as you said Sherrine, because the pain is fibro pain. I used to find ibuprofen worked well for me until I ended up in A&E because of bleeding and now I cant take any NSAID's. My hands are worse now than they were before the surgeries. I had a chat with my GP about the other surgeries that were planned and I decided not to get anymore done. I will have to look for a new rheumy. I did have a genetic test for the ankylosing spondylitis a few years ago that was negative. I took for granted that because the genetic test was negative that I did not have AS. I will have to discuss a mri with my GP. Yes, the weather has been terrible this summer in Ireland, it can go from heavy rain storms to beautiful weather in seconds. Its the worst summer I have seen here. I will have to do some stretching exercises, I just cant get enough energy to do anything. I will pop into the health shop tomorrow. Thanks for the advice Sherrine.

Hi getting by. I did discuss opiates with my GP but I'm a bit hesitant, I just might have to if this pain continues. Do you have any idea of how long it takes to build up a tolerance?

thanks...
Sean
37yo male
Posted 7/30/2012 6:03 PM (GMT 0)
Hi Sean...

I think what Sherrine was saying is that some things we end up having are not related to Fibro....like if you had carpal tunnel and plantar faciatis....those are real issues unto themselves...

It sounds like the Rheumy did a good job of sending you to an Ortho as anything that is outside the norm for Fibro should be attended to be another specialist.

And bursitis is a similar form of arthritis in that anything that ends with "itis" is inflammation. And since Fibro is not an inflammatory illness....it's important to treat those kind of things with cortisone/steroids if you can't take NSAIDs...

The key with Fibro is to keep moving. It is so important to do some sort of exercise every day. Even if it's walking or swimming...these are low impact and even though it may make you sore later...there is nothing that is injuring us by doing these. As long as you are cleared by a Dr. to do this with any other issues...So if you haven't been exercising lately...this can actually make many of your symptoms and pain much much worse.

I do about 45 minutes a day walking my dog. I also do yoga in the am and pm. I do massage, acupuncture and aqua therapy. It's also important to get a good night's sleep and eat well.

Maintaining a healthy weight helps with Fibro as well as all conditions. I switched to eating all Organic about 2 years ago and it has helped tremendously with my energy levels!

I would hope that you don't smoke as that is another issue that can make anything we have worse.

So, if the only reason you want to stop seeing this Rheumy is because he wanted to send you to the Ortho...I would reconsider as I mentioned...that was the absolutely right thing for him to do to make sure nothing else was going on.

Are you taking any type of nerve pain medication that helps with Fibro like Lyrica, Cymbalta or Savella?

How about a muscle relaxer like Flexeril, Robaxin, or Skelaxin?

Both of these medicines can be very helpful in lowering our Fibro pain. Along with the supplements that others have mentioned.

So, the key is doing as many non medicinal things we can do to help ourselves...and then adding in any medications as directed by our Drs.

But any time there is a different type of pain or issue that comes up that isn't related to Fibro....then yes, it's best to have our Dr. refer us to someone to see what it could be...
Posted 7/30/2012 7:07 PM (GMT 0)
Sean, I had plantar faciitis and wore Birkenstock shoes and that took care of it!  It took several months but it works.  The foot bed stretches the muscles and tendons.  They wanted to give me the shots in my heels and I declined.  I told a friend about these when she could barely walk, too, and it took care of the plantar faciitis for her, too.  You can have inserts made to put in regular shoes, too.  They can be a bit pricey put not as expensive as surgery!

 

I had carpal tunnel, also.  I wore the wrist braces at night and propped my wrist up when using the mouse on the computer.  I babied my wrists and this eventually went away.  Again, I turned down surgery.

 

I developed bleeding ulcers from ibuprofen last summer and stopped the ibuprofen.  Was told not to take it.  It became a quality of life issue for me.  So, I talked to the doctors.  They now have me on ibuprofen with food, a medication called misoprostol that helps protect the stomach from ulcers, and also Pepcid AC taken at night.  I used to use Prilosec to help protect my stomach but developed osteoporosis from it so I had to stop that.  Anyway, so far, so good.  I pray I don't have any more problems.

 

I have the HLA-B27 gene...a high risk factor for ankylosing spondylitis...but you can still have AS without this gene!  Google it and find out.  So, that still could be what is going on or it could be something else.

 

Prednisone/Cortisone...taken occasionally is fine but having to take it long term can cause a myriad of problems.  I've tried to avoid it as much as possible.  I've had to take some for Crohn's and I've also used Prednisone drops for iritis that I get from either Crohn's or AS.  But this is only occasionally.  Here is a link from the Mayo Clinic about these drugs

 

http://www.mayoclinic.com/health/steroids/HQ01431

See if you can be put on Robaxin or another muscle relaxer.  That has helped me a lot.  Also, gentle massages help but make sure the therapist has studied as to how to massage people with fibro and chronic pain.

 

Sherrine

 

Posted 7/30/2012 9:12 PM (GMT 0)
Mayo2012,

I took vicodin for about nine or ten years before I went up to the percocet. So you can maintain your pain (the rain in spain falls mainly on the plain) for a long time. As long as you don't go over the recommended dose as I don't think you would. It is the people who take more than they should who usually build up a tolerance faster. I did start out with the five mg vicodin, then after a few years went to the 7.5. Eventually I went to ten. The trick is to start out with the lowest or weakest pain killer. And to take it sparingly. It might take awhile to find the starting point. I really didn't feel relief off of the vicodin until I got to the 10 mg which are called norco. There is also lortab. But it has more tylenol in it, so the doctor put me on the norco. But yeah, I believe I had to start taking the opiates in 2002. This past month or so I graduated to the percocet. I did start with fives. But ended up on 7.5's. The 2.5 mg of oxycodone made a huge difference in the way I felt. I am not pain free by any means. But I can live with this pain. If a person wants to be completely pain free, I think they would move up the ladder too fast and run out of options. It is really funny with the amount of pain we can actually tolerate. I am always at a 3 or 4. I don't think I have had a pain free day since this started in 2002. I think if I did, I would remember that. I would be celebrating.

As Sherrine said, the malic acid/magnesium supplements help a lot. I would try them first. They are truly affordable and worth the try. Also vitamin D3 helps me a lot. And about the massage. Do make sure your therapist knows about fibromyalgia. I have had too deep of a massage before and experienced a lot of pain from it. Gentle light massage is the best. I am very fortunate. My psychologist does massage therapy.

I sure do hope that you feel better soon. Try to keep moving. Oh and if you do decide to try the malic, puritan's pride sells it with the magnesium already in it. It doesn't always say it has it, but it does. They often have good sales like buy two and get three free.

Take care...

Hugs, Karen
Posted 7/31/2012 7:17 AM (GMT 0)
Thank you very much for the great advice everyone. I will start the supplements today and see how it goes. Failing that I will speak with my GP about changing the painkillers.

Sorry if I picked you up wrong. The reason I am not happy with either my Ortho or rheumy is because I am experiencing more pain now that I was before I went to the Ortho, especially my heels where I got some shots for PF. My rheumy also did not give me very many options, apart from Calmare treatment, and did not really explain things with me. I was more or less sent on my way to the Ortho, who is very quick to operate. My GP intervened and convinced me not to have any further surgeries. She said the pain is Fibro pain and surgeries probably wont help. The rheumy did not want to see me again.

Thanks again for all of your help, a lot to consider. I still have a lot to learn about fibro.

Sean
37yo male.
Posted 7/31/2012 2:24 PM (GMT 0)
I have had wrist problems since I was about 10, my dr then told mom I was constantly spraining them. Over the years I have had better drs, specialists examine them and diagnose carpel tunnel, they spoke of the surgery but I always babied them and the pain slowly went away. Now I know it's fibro, when I am flaring they hurt so bad when I am not they still ache sometimes and sometimes not.
Try different supplements, medications until you find what works for you, we are all so different what works for one might not for another.
Posted 8/1/2012 3:13 AM (GMT 0)
Hi -
Although Fibro is not technically a progressive disorder, nor a structural one, I've found that many of us do feel worse with time in one way or another. It seems that I've had problems added on over the past few years (extreme fatigue, more frequent headaches) and definitely worse pain. I don't really "flare", I feel like I'm in one all the time.

I had to go to pain meds many years ago. It was the only thing that gave me 'some' relief 'sometimes'. Do I want to be on them? No, but I also want some quality of life. My Dr's all agree that I very well may be on something for the rest of my life. Of course, I'm hoping not, but it was good to hear in a validating way from Dr.'s that they understood the severity of my pain.

I hope that you get some relief soon. I know it's so hard. I've recently had to stop working as well - and I had a great flexible job that I loved. I hurt every single day and very often to the point where I can do nothing but lay down.
Posted 8/1/2012 7:58 AM (GMT 0)
Rose, I did associate the pain in my wrists and hands with fibro until I was told differently by my rheumy. Sometimes my hands hurt and sometimes they didn't. I could spend a whole day fly fishing without any problems but another day I wasn't able to put sugar in my tea. Now, since the surgery, when I have a flare up all around the incision area and down my wrists turns a dark purple/blue color, along with worse pain than I had before. Strange, like most things with fibro I guess. Thanks Rose.

Hi Jacey. Thanks for replying. I defo feel worse now that I did a few months ago. Like you I have a few new problems than I used too. Some annoying and some very painful. I wish I didn't have to give up work either. I had a good job in IT security that I enjoyed and was quite good at it. I just couldn't do it anymore. It was too painful and stressful. I was doing a MSc in computer security and forensics but that too has ended.

Thanks again everyone.

Sean
35yo male.
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