New to this forum and would love some help and advice

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peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 3/26/2010 9:46 PM (GMT -7)   
Hi everyone,
I'm a regular user of the RA site and the people, advice and support are wonderful but I just thought that as I've been in constant pain, 24/7 for the last two years I would ask for some advice.  Just how do you cope with severe pain all the time??????
 
I was told I had AS two years ago and since then my wonderful specialist has been trying everything there is to get me some relief, which to be fair he has to my back but the main problem area is my right foot....the pain I have in my ankle/foot is only what I can discribe as 'someone has put metal kebabs into a fire and then pushed through the foot and ankle straight after!!!! I'm currently taking Methotrexate, and have 6 weekly infusions in the hospital for the day, as I said this is all helping but not in the foot.  This past week I went in for them to inject into the ankle/foot to give pain relief, but not only was the procedure really painful but I've now gone 3 steps back as the pain is at least 10 times worse.....  I really need some advice on how to cope with it as I have decided that as nothing is working I should stick with the programme of meds I'm on now and just learn to cope and adjust to it. I have a disabled sticker for my car and a walking stick to help me around, I just need the strength mentally to adjust to this being as good as it will get.
 
Thank you for listening.
 
Peggy Baggins
Peggy Baggins
 
AS - High Blood Pressure - Irregular Heartbeats - High Cholesterol - Insulin Resistants Disease
Meds: Remicade, Methotrexat, Micardis,  Verapamil,  Lipitor,  Metformin


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 3/26/2010 10:13 PM (GMT -7)   
Hi Peggy...

I'm glad you posted on the CP board... I know that others will be along to support and encourage you.

I've dealt with chronic pain for a long time... Over the years, I've done many things to deal with the physical aspect of it: medications; physical therapy; injections; etc etc. I also have a disability sign for my car... and a wheelchair for when I need it.

The biggest struggle, for me as well, has been the mental aspect of knowing that my body just won't do what I want it to. I wish I had more advice on how to deal with it... The only thing I can say is that it has gotten easier over the years to accept this "new" reality. Don't get me wrong...I hate it :) and would go back to my "old" self in a heartbeat. But my health conditions don't seem to be going anywhere...

Anyway, I hope you continue to seek out support here on the board... it really does help to talk to people that "get it".

I hope you feel better, Peggy... Take care,
Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 3/26/2010 10:52 PM (GMT -7)   
Hi Peggy!

Tina gives out wonderful advice, as least it's how I feel also. One thing to consider is a pain counselor. Many folks on the forums have had very good results with learning to live and deal with their pain on a lifelong basis. Also some folks find 'in person' support groups to be very helpful. In person conversation with people who live in your own area can be a great support network for those of us who live with pain as you do. No group in your area? Start one! There are lots of rooms that you can use for free to meet. Most libraries have free meeting rooms.

The way I deal with it is to keep busy with things I love. I'm a quilter and never have enough time to sew. I always seem to be cleaning or doing something for someone else instead of quilting but hubby has been pushing me to change my priorities and put me up there on the top of the list...finally. He just might have something there!

Good luck and keep this topic going. I think it's a great one.
Chutz
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 3/27/2010 3:17 AM (GMT -7)   
Hey Peggy,
The two people who are great with advise have given their's already, but I'll tell you how I deal with mine. I feel like I just kind of don't! I use medication, rest when I need to, work with whatever I can, when I can. Sometimes I'm in bed for days on end and sometimes I am up and going where I have to go such as dr. appts. I can not drive right now which is so depressing to me, but my husband is good to drive me any place I have to go. I miss going and just shopping by myself, but there are worse things. And most importantly, I guess for me I have accepted the fact that I don't have a choice. I am going to have a day with at least a level 7 pain and more often than not it will be higher than that. I've begun to quit feeling sorry for myself, but I still do and I cry when I do. The most important thing is to talk to others who know what chronic pain feels like. I've said this before, but I'll say it again. If you have a support system in place and they just can not understand what chronic pain feels like, I say get a clothes pin, put it on the forefinger of the persons finger then tell them to leave it on 15 minutes longer than they think they can stand! They never last the 15 minutes longer and it gives them an idea of how nagging the consistent pain can be. It's just a thought. My husband did it just to get an idea and he was so irritable afterwards that I called it to his attention! He "got" it. Take care of yourself. Don't push any harder than you feel you can or you will pay for it tomorrow!
Good luck and let us hear back from you,
Catz4
I'm called Cat, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4
DXed-Syringomyelia C-1 to T-1, Hypothyroidism, Diabetes Type II, IBS, Panic Disorder, ICC , Fibromyalgia, Migraines, Bipolar Disorder, Chronic Muscle Spasms, Torn Rotator Cuff in Left Shoulder, Had emergency surgery for ruptured bowel in '05 w/colostomy and takedown in '06.
Too many meds to name/Too many allergic reactions/sensitivities to too many drugs to name. Meds for Panic Disorder, Pain, Bipolar, IBS, Hypothroidism, Diabetes, Insomnia and then some.
 
 


Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 3/27/2010 5:32 AM (GMT -7)   
Hello Peggy and welcome to the board!

Sorry it took so long to respond (it's been a really crazy week).

Anyway, like the others who have already posted, I take it a day at a time. Somedays I feel OK and some days I feel like somebody has beaten me with a hammer all over. I'm sure you have ups and downs too and that these medical procedures (and their additional pain) are making you feel even worse right now.

I can't really give pain advice, but I can lend an ear for a vent.

Again, welcome aboard!
Formerly PrayingForRealRelief...
 
DDD, CHRONIC PAIN SYNDROME, TLIF L5-S1 2009 (failed), FIBRO, MINEYER'S (SP?), VERTIGO, MIGRAINES, GERD, SLEEP DISORDER, NISSEN FUNDOPLICATION (failed), DEPRESSION, EXTREME ANXIETY DISORDER, OCPD, PTSD, CHRONIC MUSCLE SPASMS, HUMAN GROWTH HORMONE DEFICIENCY, VITAMIN D DEFICIENCY, CARPLE TUNNEL SYNDROME, EXTREME IDIOPATHIC HYPOGLYCEMIA FROM AGE 12
 
 
 
 


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 3/27/2010 9:05 AM (GMT -7)   
 
 
   Dear Peggy,
 
     Good morning. My name is Dani and it is very nice to meet you. Welcome to the Chronic Pain forum. We are a loving, caring bunch who all support one another in our ups and downs of living with chronic pain. Also, we have "chat night" every Thursday evening, perhaps you can join us?
 
     Learning to live and adjust your life to chronic pain is very hard. I sought the assistance of a Pain Psychologist to help guide me through the process. Living with chronic pain alone, is a task in of itsself. Learning to re define yourself with chronic pain as a part of who you are , but NOT what defines you takes alot of work. Pain Psychologists will help you to understand the physical and chemical reaction to constant pain, coping techniques, cognitive behavioural therapy, biofeedback, re structuring and re defining your entire life style. I highly recommend seeking the assistance of one to anyone who is diagnosed with a chronic illness.
 
 
     Again, it was very nice to meet you. I look forward to getting to know you better as time goes by. I hope you have a few moments to relax today.
 
*hugg*
  dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 3/27/2010 3:52 PM (GMT -7)   
Wow, what can I say?
 
I know that this whole site is a 'god send' but you guys really are sweet. You helped by just replying and reading your posts actually but a smile on my face today, so thank you for that.
 
I've woken today feeling much better, not so disappointed and like a 'lion with a thawn in it's foot' which I'm sure my husband is glad about :-) . He's so supportive and really sorry that I'm in this pain and situation. He keeps saying he's sorry and I've told him to stop, it's not he's fault and he can't do anything other than support me, love and help me when needed, all of which he does on a daily basis.
 
I'm going tomorrow to talk to the specialist about a plan of action I think, maybe the pain clinic etc also I will look  myself for a support group as suggested by you all.
 
I will let you know how things went once I've been.
Thank you once again for all your thoughts, prayers and hugs.  I accepted them all.
 
Peggy Baggins
 
AS - High Blood Pressure - Irregular Heartbeats - High Cholesterol - Insulin Resistants Disease
Meds: Remicade, Methotrexat, Micardis,  Verapamil,  Lipitor,  Metformin

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